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. :)
Tuesday, December 21, 2010
Thursday, December 16, 2010
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
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
Thursday, November 25, 2010
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. :)
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?".
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. :)
Monday, October 25, 2010
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!
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!
Sunday, October 17, 2010
"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...
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.
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...
Sunday, October 3, 2010
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.
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.
Wednesday, September 29, 2010
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.
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.
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. :)
Monday, August 30, 2010
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.
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.
Monday, June 21, 2010
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
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
Friday, June 11, 2010
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!
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!
Thursday, May 27, 2010
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. :)
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. :)
Friday, May 7, 2010
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! :)
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! :)
Sunday, April 18, 2010
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.
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.
Friday, April 2, 2010
"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.
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.
Wednesday, March 31, 2010
Insidious Tastebuds
I am finding that I don't notice the fact that I can't taste things quite as often. At first I thought it may be that I'm getting used to the lack of this sense. Then I began to realize that I could distinguish little nuances in foods. I wouldn't say that I CAN taste things, but I wouldn't say that I CAN'T anymore. It is such a gradual, insidious development. I guess I expected zaps of flavor... like one day tasting a certain spice or flavor and the next day tasting another. It's not really like that at all. Food just sorta becomes less and less bland. I feel like one day I'll just start commenting on how bad or how good something tastes and I won't even realize it.
The one thing that I still can't really taste is 'sweet'. Breakfast pastries just taste like bread. Ice cream is like really cold milk. Candy is pretty much just flavorless.
Regardless, I'm just happy to have realized my tastebuds may be coming back. I missed them greatly.
The one thing that I still can't really taste is 'sweet'. Breakfast pastries just taste like bread. Ice cream is like really cold milk. Candy is pretty much just flavorless.
Regardless, I'm just happy to have realized my tastebuds may be coming back. I missed them greatly.
Monday, March 29, 2010
Douglas Adams was on to something
"A towel, it says, is about the most massively useful thing an interstellar hitchhiker can have. "
Replace towel with scarf (which really is just a thin towel) and I couldn't agree more. Since wearing my array of scarves whenever I leave the house, I have begun to realize its multiple applications, especially when I travel.
Already this morning I have utilized my scarf as follows:
Use 1 - style, warmth, and protection to my sun-sensitive neck.
Use 2 - napkin
Use 3 - bag
Use 4 - blanket
Use 5 - hankerchief
Use 6 - iPhone screen cleaner
Use 7 - "gloves" (hand protection from hot or cold)
Use 8 - blog topic :)
Well, my flight back to Tucson should be boarding shortly. I had a great time visiting my family, but it'll be nice to be home.
Replace towel with scarf (which really is just a thin towel) and I couldn't agree more. Since wearing my array of scarves whenever I leave the house, I have begun to realize its multiple applications, especially when I travel.
Already this morning I have utilized my scarf as follows:
Use 1 - style, warmth, and protection to my sun-sensitive neck.
Use 2 - napkin
Use 3 - bag
Use 4 - blanket
Use 5 - hankerchief
Use 6 - iPhone screen cleaner
Use 7 - "gloves" (hand protection from hot or cold)
Use 8 - blog topic :)
Well, my flight back to Tucson should be boarding shortly. I had a great time visiting my family, but it'll be nice to be home.
Thursday, March 25, 2010
A bum bum
So right now my left leg / butt is kinda sore / bruised. To explain why let me start at the begining...
Tuesday morning at 2am, I woke up, ran to the bathroom, and started puking. Why? I don't know. I took my temperature. It was 97ish, so normal for me. I was slightly clammy, but feeling better so I went back to sleep. About an hour later I woke up again and repeated this process. This continued until about 9:00am. Needless to say, I had to take a sick day from work. :/ Was it food poisoning? Jake ate the same stuff that I did, so probably not. Maybe it was just a stomach bug. I had a couple sips of water throughout the morning, but nothing like what I normally do. Around 2:00pm I finally tried to eat stuff. For the rest of the day I had a smoothie and maybe 1/4th a can of soup.
Well, I guess that wasn't enough fluid intake with all the puking I was doing, because when I woke up yesterday morning I was quite dehydrated and I ended up fainting a few times... first in the shower, then getting out of the shower, then trying to brush my teeth. By the third fall I had woken up Jake. I guess I gave him a good scare. He said my eyes were wide open, just staring blankly. I didn't know that happens when you faint. Weird.
Anyway, this is why I'm sore today. I must have fallen on my backside. I guess I should be glad it wasn't my head!
I'm actually in the airport now, getting ready to go visit my sister, my belated birthday gift to her. This should be a fun weekend! I just hope sitting on the plane isn't going to make my bum bum any more uncomfortable.
Tuesday morning at 2am, I woke up, ran to the bathroom, and started puking. Why? I don't know. I took my temperature. It was 97ish, so normal for me. I was slightly clammy, but feeling better so I went back to sleep. About an hour later I woke up again and repeated this process. This continued until about 9:00am. Needless to say, I had to take a sick day from work. :/ Was it food poisoning? Jake ate the same stuff that I did, so probably not. Maybe it was just a stomach bug. I had a couple sips of water throughout the morning, but nothing like what I normally do. Around 2:00pm I finally tried to eat stuff. For the rest of the day I had a smoothie and maybe 1/4th a can of soup.
Well, I guess that wasn't enough fluid intake with all the puking I was doing, because when I woke up yesterday morning I was quite dehydrated and I ended up fainting a few times... first in the shower, then getting out of the shower, then trying to brush my teeth. By the third fall I had woken up Jake. I guess I gave him a good scare. He said my eyes were wide open, just staring blankly. I didn't know that happens when you faint. Weird.
Anyway, this is why I'm sore today. I must have fallen on my backside. I guess I should be glad it wasn't my head!
I'm actually in the airport now, getting ready to go visit my sister, my belated birthday gift to her. This should be a fun weekend! I just hope sitting on the plane isn't going to make my bum bum any more uncomfortable.
Monday, March 22, 2010
No more chemo!
I got a voicemail from my MO's office this morning. "Hi. This is David from Dr. Kratz's office. This message is for Jennifer. Dr. Kratz just finished speaking with another physician and there will be no more chemo, but she wants to be sure to see you right after your next PET/CT."
Horay! I mean maybe it's not super exciting. On the one hand this means further treatment didn't seem beneficial and I still may worry that I didn't do everything I could.... On the other hand, I can finally start trying to get back to normal and I don't have to worry about going though all those nasty side effects again or losing my hair. I am very happy about that. :)
I had a check-up with my RO last Friday. He seemed to think I was doing remarkably well. He told me he's been working on writing a paper about me. I'm one of 18 subjects for who he modeled radiation plans to spare a major salivary gland. The gland in my right cheek got about 1/10 the dose of radiation given by your average cancer center. With the special tomotherapy machine that they used, they were able to really pinpoint the radiation to hit certain places and avoid others. That is why even though I have to drink more water than your average person (especially with meals), my mouth doesn't particularly feel dry all the time. Other patients I've spoken with can't go more than 10-15 minutes without water. I can go an hour or two before it really starts to bother me. Let's hope my RO's paper can continue to improve the quality of life for future oral cancer patients.
I still have many doctor appointments and health issues. I have to schedule a swallow test and a hearing test to compare to the baselines I had. I have to have bloodwork done monthly for a while. I have to schedule a check-up with my ENT. I see my MO for a checkup in about 3 weeks. I'll see my RO in about 3 months. I'll have a PET/CT in May. I'm not 100% normal yet by any means. My saliva isn't up to normal levels. I still can't taste most things. My speech is labored and somewhat difficult to understand. I have to watch out for signs of hypothyroidism as I will almost definitely develop this at some point because of the chemo. I am still fatigued a lot of the time. The insides of my mouth are extremely sensitive and eating almost anything causes blisters on the insides of the cheeks and lips. The bumps go away within 12 hours and they don't hurt, but it's still annoying.
Like I said, though.... now that I know I don't need more chemo now, at least I can start trying to get back to normal. I think tomorrow I will call the medical supply company and finally return that suction machine. :)
Horay! I mean maybe it's not super exciting. On the one hand this means further treatment didn't seem beneficial and I still may worry that I didn't do everything I could.... On the other hand, I can finally start trying to get back to normal and I don't have to worry about going though all those nasty side effects again or losing my hair. I am very happy about that. :)
I had a check-up with my RO last Friday. He seemed to think I was doing remarkably well. He told me he's been working on writing a paper about me. I'm one of 18 subjects for who he modeled radiation plans to spare a major salivary gland. The gland in my right cheek got about 1/10 the dose of radiation given by your average cancer center. With the special tomotherapy machine that they used, they were able to really pinpoint the radiation to hit certain places and avoid others. That is why even though I have to drink more water than your average person (especially with meals), my mouth doesn't particularly feel dry all the time. Other patients I've spoken with can't go more than 10-15 minutes without water. I can go an hour or two before it really starts to bother me. Let's hope my RO's paper can continue to improve the quality of life for future oral cancer patients.
I still have many doctor appointments and health issues. I have to schedule a swallow test and a hearing test to compare to the baselines I had. I have to have bloodwork done monthly for a while. I have to schedule a check-up with my ENT. I see my MO for a checkup in about 3 weeks. I'll see my RO in about 3 months. I'll have a PET/CT in May. I'm not 100% normal yet by any means. My saliva isn't up to normal levels. I still can't taste most things. My speech is labored and somewhat difficult to understand. I have to watch out for signs of hypothyroidism as I will almost definitely develop this at some point because of the chemo. I am still fatigued a lot of the time. The insides of my mouth are extremely sensitive and eating almost anything causes blisters on the insides of the cheeks and lips. The bumps go away within 12 hours and they don't hurt, but it's still annoying.
Like I said, though.... now that I know I don't need more chemo now, at least I can start trying to get back to normal. I think tomorrow I will call the medical supply company and finally return that suction machine. :)
Wednesday, March 17, 2010
My 100th blog post
I can't believe I'm up to 100 blog posts already! It seems like just yesterday I started all of this.
I don't have much to talk about today, other than the fact that my MO's office called. They left a message saying they want me to call them back regarding the question we spoke about yesterday. I assumed it was serious and apprehensively called them back. It turns out they just wanted to let me know that my MO called that other doctor's office, only to find out he's out of town until Monday. They just wanted me to know I shouldn't expect a call from them until early next week. If that's all it was, why not leave that in the voicemail.... oh well. The longer they put off giving me an opinion, the more I question how much I really need it. They don't seem very concerned about its urgency regardless.
I don't have much to talk about today, other than the fact that my MO's office called. They left a message saying they want me to call them back regarding the question we spoke about yesterday. I assumed it was serious and apprehensively called them back. It turns out they just wanted to let me know that my MO called that other doctor's office, only to find out he's out of town until Monday. They just wanted me to know I shouldn't expect a call from them until early next week. If that's all it was, why not leave that in the voicemail.... oh well. The longer they put off giving me an opinion, the more I question how much I really need it. They don't seem very concerned about its urgency regardless.
Tuesday, March 16, 2010
The longest I've gone between blogs
Well, things MUST be getting better. I'm blogging less and less. ha!
Truth be told, things ARE getting better, slowly, but surely. Also, though, I've been pretty busy at work and at home taking care of chores. Since I no longer am undergoing treatment, my husband has become less apt to help out with chores and I don't have friends or family coming over and offering to clean my dishes or do my laundry or whatnot. I think some of the radiation/chemo fatigue is persisting, so it makes it a lot harder to get motivated to do things. I may also be tired because I have started trying to get to work earlier. There is a daily meeting at 7am, which I have never attended. I would really like to make these meetings. As of late I've been getting to work around 7:15 or so.... if only I could wake up 15 minutes earlier...
So, many of you out there may be wondering what I heard from my MO about TPF chemo. The answer is nothing yet. It has been a week, so I called her today. I guess she's still waiting on hearing back from another doctor and she'll call me after that. I've been doing research on my own regarding the subject. There are a handful of studies showing a slight increase in survival rate when TPF is applied BEFORE radiation/chemo treatments. There are many studies showing advantages to doing Cisplatin chemo in conjunction with radiation therapy (like I had done). I have yet to find a single study that looks into TPF chemo AFTER radiation/chemo. I found one journal that said there have been little to no studies on adjuvant chemo given post-treatment and what studies have been done show no advantage in survival rates. At this point I'm really starting to wonder if it's worth doing and how critical it is if it's been over a month since I finished treatment and they're still debating whether I should do it or not. I've already made plans for myself for the next three months. I don't have time to let more chemo get in the way. I'm going to visit my sister next week! :) Then in just about 3 months time, my best friend from high school (and one of my bridesmaids at my wedding) is getting married. I'll get to see a bunch of my high school friends. It'll be a walk down memory lane. Regardless, I don't want chemo to interfere with my trips and I don't want to show up at a wedding nauseated and bald. *sigh* Like I've said before, though, I'm just going to have to wait and see what the doctor suggests and go from there.
An update on tastes... I seem to be getting back hints of bitter, sour/acidity, and spicy. You may think this is great.... but when you eat a hot dog and all you taste is relish and maybe a tinge of ketchup, that's kinda gross. Or when you make a french silk pie for Pi Day (3/14 - yes I am a dork) and all you can taste is the bitterness of the chocolate, it's kinda disappointing. The other night we went out for dinner and I ordered fish and chips. The comforting fattiness of the fried food (which I've realized doesn't have a taste really anyway) and the ability to somewhat taste the tartar sauce actually made for a pretty yummy dinner. With it only being a month post-treatment I am optimistic my tastes will return earlier than average.
I still have to down 2-4 large glasses of water with every meal, which makes me have to pee a lot (including 1-3 times in the middle of the night). This may also be why I seem to be tired a lot, lately. Oh well....
So.... overall things are on the up-and-up. I'll let you all know when I hear from my MO, but for now I am just happy for the little improvements I continue to see.
Truth be told, things ARE getting better, slowly, but surely. Also, though, I've been pretty busy at work and at home taking care of chores. Since I no longer am undergoing treatment, my husband has become less apt to help out with chores and I don't have friends or family coming over and offering to clean my dishes or do my laundry or whatnot. I think some of the radiation/chemo fatigue is persisting, so it makes it a lot harder to get motivated to do things. I may also be tired because I have started trying to get to work earlier. There is a daily meeting at 7am, which I have never attended. I would really like to make these meetings. As of late I've been getting to work around 7:15 or so.... if only I could wake up 15 minutes earlier...
So, many of you out there may be wondering what I heard from my MO about TPF chemo. The answer is nothing yet. It has been a week, so I called her today. I guess she's still waiting on hearing back from another doctor and she'll call me after that. I've been doing research on my own regarding the subject. There are a handful of studies showing a slight increase in survival rate when TPF is applied BEFORE radiation/chemo treatments. There are many studies showing advantages to doing Cisplatin chemo in conjunction with radiation therapy (like I had done). I have yet to find a single study that looks into TPF chemo AFTER radiation/chemo. I found one journal that said there have been little to no studies on adjuvant chemo given post-treatment and what studies have been done show no advantage in survival rates. At this point I'm really starting to wonder if it's worth doing and how critical it is if it's been over a month since I finished treatment and they're still debating whether I should do it or not. I've already made plans for myself for the next three months. I don't have time to let more chemo get in the way. I'm going to visit my sister next week! :) Then in just about 3 months time, my best friend from high school (and one of my bridesmaids at my wedding) is getting married. I'll get to see a bunch of my high school friends. It'll be a walk down memory lane. Regardless, I don't want chemo to interfere with my trips and I don't want to show up at a wedding nauseated and bald. *sigh* Like I've said before, though, I'm just going to have to wait and see what the doctor suggests and go from there.
An update on tastes... I seem to be getting back hints of bitter, sour/acidity, and spicy. You may think this is great.... but when you eat a hot dog and all you taste is relish and maybe a tinge of ketchup, that's kinda gross. Or when you make a french silk pie for Pi Day (3/14 - yes I am a dork) and all you can taste is the bitterness of the chocolate, it's kinda disappointing. The other night we went out for dinner and I ordered fish and chips. The comforting fattiness of the fried food (which I've realized doesn't have a taste really anyway) and the ability to somewhat taste the tartar sauce actually made for a pretty yummy dinner. With it only being a month post-treatment I am optimistic my tastes will return earlier than average.
I still have to down 2-4 large glasses of water with every meal, which makes me have to pee a lot (including 1-3 times in the middle of the night). This may also be why I seem to be tired a lot, lately. Oh well....
So.... overall things are on the up-and-up. I'll let you all know when I hear from my MO, but for now I am just happy for the little improvements I continue to see.
Monday, March 8, 2010
I don't want to lose my hair
So I had my check-up with my MO today. My bloodwork and everything else looks good. I don't need more bloodwork for a month and I'll get a PET scan in another 9 weeks. All seemed good. Then we talked about the possibility for more chemo...
My MO wants to do a bit more research and will be calling me within a week. Many head and neck cancer patients receive TPF (docetaxel, cisplation, and 5 Fluorouracil) Chemotherapy, which consists of a 5 day infusion of those three drugs once a month, for three months, followed by radiation with continued doses of Cisplatin. Other head and neck cancer patients receive just the Cisplatin with radiation, which is what I did. The first treatment plan is better for advanced, aggressive cancers like the one I had, but requires a 9 week time frame before beginning radiation. My team agreed by the time I saw my RO that it was best to begin radiation right away. 9 weeks would have been too long to wait. The suggestion now is to tack on the 3 courses of TPF now that my radiation is finished. My MO does not have a lot of research data on that protocol, so she is currently talking to several other sources before she makes the final recommendation. The idea would be that this other course of treatment would kill any possible remaining cancer cell that is left now, once and for all. If I were to have another recurrence, that might just be the end of me. We want to hit this thing with everything we got, now, while any cancer that may still be remaining is microscopic and easy to kill.
That being said, I asked my MO how the side effects from those two other drugs compare to Cisplatin and what I'd have to look forward to. The answer was not very pleasant. In addition to the nausea and fatigue, from least to most worse (in my opinion) the three drugs would compound the chances of neuropathy and/or tinnitus, they would give me horrible diarrhea, they will cause radiation recall (bringing back the mouth sores, lack of saliva, and radiation burns), and all my hair would fall out. Given that information I don't know if I could handle going back on chemo. I almost think I could handle the radiation recall, but I don't want to lose my hair. Not only does the hair on your head fall out, but so does everywhere else....like your eyebrows and your eyelashes. I just don't think I could handle that.
I really don't know what I'm going to say if my MO suggests I should do it. I don't want a recurrence. I don't want to die prematurely. I don't want to have in my mind the constant fear that I didn't do everything in my power to fight this cancer. But.... I don't want to subject myself to such torture. I don't want to have to worry about missing work again or going out on disability. And most of all, I don't want to lose my hair.
My MO wants to do a bit more research and will be calling me within a week. Many head and neck cancer patients receive TPF (docetaxel, cisplation, and 5 Fluorouracil) Chemotherapy, which consists of a 5 day infusion of those three drugs once a month, for three months, followed by radiation with continued doses of Cisplatin. Other head and neck cancer patients receive just the Cisplatin with radiation, which is what I did. The first treatment plan is better for advanced, aggressive cancers like the one I had, but requires a 9 week time frame before beginning radiation. My team agreed by the time I saw my RO that it was best to begin radiation right away. 9 weeks would have been too long to wait. The suggestion now is to tack on the 3 courses of TPF now that my radiation is finished. My MO does not have a lot of research data on that protocol, so she is currently talking to several other sources before she makes the final recommendation. The idea would be that this other course of treatment would kill any possible remaining cancer cell that is left now, once and for all. If I were to have another recurrence, that might just be the end of me. We want to hit this thing with everything we got, now, while any cancer that may still be remaining is microscopic and easy to kill.
That being said, I asked my MO how the side effects from those two other drugs compare to Cisplatin and what I'd have to look forward to. The answer was not very pleasant. In addition to the nausea and fatigue, from least to most worse (in my opinion) the three drugs would compound the chances of neuropathy and/or tinnitus, they would give me horrible diarrhea, they will cause radiation recall (bringing back the mouth sores, lack of saliva, and radiation burns), and all my hair would fall out. Given that information I don't know if I could handle going back on chemo. I almost think I could handle the radiation recall, but I don't want to lose my hair. Not only does the hair on your head fall out, but so does everywhere else....like your eyebrows and your eyelashes. I just don't think I could handle that.
I really don't know what I'm going to say if my MO suggests I should do it. I don't want a recurrence. I don't want to die prematurely. I don't want to have in my mind the constant fear that I didn't do everything in my power to fight this cancer. But.... I don't want to subject myself to such torture. I don't want to have to worry about missing work again or going out on disability. And most of all, I don't want to lose my hair.
Saturday, March 6, 2010
I like my new size
Today was a good day. I got a few chores done this morning and felt productive. Then this afternoon I went shopping with Jake. Jake got some shoes. I got a bunch of new clothes, 2 pairs of dress pants, 2 pairs of jeans, and 5 shirts, actually. They were all 1 to 2 sizes smaller than my current clothes, so that just made me feel really good. I think that my new sizes (S or XS shirts and size 4 short pants) are a lot more popular, though, and I had a really hard time finding dress pants in my size. I'm having to hem one of the pairs I bought, even. Jake and I went out to eat for dinner, tonight. I ordered an appetizer as my main course and only ate half of it (and I couldn't really taste it, of course). It didn't matter, though. I was just excited to be out at a restaurant again. I don't think I've been out to eat in a few months. So yes, it was a very good day.
On the downside, I'm a bit worried that I will soon outgrow my new clothes. Over the course of treatment I lost 20 pounds. I think my metabolism is ridiculously low, because near the end I was barely consuming 700 calories a day and puking a lot, yet I managed to not lose all that much weight. Now I'm eating again, but it takes me so long to eat, my portion sizes are much much smaller. I am not really consuming that many calories per day. Even so, this past week I put on 5 lbs! I'm hoping that my body was just regaining muscle and stabilizing itself or something. I don't mind the 5 lbs, but I don't really want to put on any more. I kinda like my new size. I'm thinking maybe I just need to be more active again. I used to be good about using the elliptical machine or doing yoga or something about 4 times a week. I sorta gave that up last October when I was diagnosed with my recurrence. It would be nice to jut use the elliptical machine every once in a while and keep small portion sizes and be able to stay this size. If I have to be more drastic than that, I am going to be very very sad.
One more complaint for the day. Waiters have a tendency to ask you "how's everything tasting?" That is very annoying when you can't taste things. I kept just keeping quiet tonight and at one point the guy was like "Is everything ok?" I don't know... maybe I just should have yelled "I just finished radiation treatments to my head and neck and my tastebuds are fried. I can't taste anything!". Eventually I just started lying and saying it was good. Oh well..... it's interesting what people don't realize sometimes.
On the downside, I'm a bit worried that I will soon outgrow my new clothes. Over the course of treatment I lost 20 pounds. I think my metabolism is ridiculously low, because near the end I was barely consuming 700 calories a day and puking a lot, yet I managed to not lose all that much weight. Now I'm eating again, but it takes me so long to eat, my portion sizes are much much smaller. I am not really consuming that many calories per day. Even so, this past week I put on 5 lbs! I'm hoping that my body was just regaining muscle and stabilizing itself or something. I don't mind the 5 lbs, but I don't really want to put on any more. I kinda like my new size. I'm thinking maybe I just need to be more active again. I used to be good about using the elliptical machine or doing yoga or something about 4 times a week. I sorta gave that up last October when I was diagnosed with my recurrence. It would be nice to jut use the elliptical machine every once in a while and keep small portion sizes and be able to stay this size. If I have to be more drastic than that, I am going to be very very sad.
One more complaint for the day. Waiters have a tendency to ask you "how's everything tasting?" That is very annoying when you can't taste things. I kept just keeping quiet tonight and at one point the guy was like "Is everything ok?" I don't know... maybe I just should have yelled "I just finished radiation treatments to my head and neck and my tastebuds are fried. I can't taste anything!". Eventually I just started lying and saying it was good. Oh well..... it's interesting what people don't realize sometimes.
Wednesday, March 3, 2010
Flavorless and frustrating
I haven't posted in a while.... no news is good news, right? Well, mostly...
Things continue to improve daily. I'm spitting less and my mouth sores are visibly shrinking. I'm down to two main ones that are under my tongue, one on the tip and one to the left. I try to avoid getting food particles under my tongue when I eat, so most of the time it's not so bad. I haven't needed to use my suction machine in a couple of days. I've even made it a few nights without having to wake up because I'm coughing or gagging from too much saliva or lack thereof. Yes, things are looking up.
That being said...eating sucks! Every night, I decide on something fabulous I've missed eating and want to try. I sit it in front of me and take in the smell. I get so excited, thinking it's going to be so great eating it again after all this time. I take a bite.... and nothing. It's completely flavorless. Then I'm forced to use water to even get it down. It's just a huge letdown. An hour later, when I've had a kid-size portion of food, I give up and refrigerate the rest.
Today at work I was eating mac and cheese. My coworker, who is a 1.5 year survivor of head and neck cancer, saw me and said, "mmmm.... macaroni and cheese. I bet that slides down easy." Yeah, I guess so. He told me there will come a day when just finding food that slides down easy will make me happy. He says when he goes out to eat with his wife he specifically looks for restaurants with cream soups so that he can have something pleasant to eat. I really doubt that will ever make me happy! This whole ordeal with food is just frustrating. I love good food. I want to be able to taste it and appreciate it again. My coworker has just recently regained taste. I don't want to wait 1-2 years to get my taste back! That's so long! :( I guess I just have to keep reminding myself of the alternative.... having taste and not having done the radiation treatments, which would have certainly killed me within the next few years.... and then I wouldn't really be able to appreciate food anyway, now would I? :\
Things continue to improve daily. I'm spitting less and my mouth sores are visibly shrinking. I'm down to two main ones that are under my tongue, one on the tip and one to the left. I try to avoid getting food particles under my tongue when I eat, so most of the time it's not so bad. I haven't needed to use my suction machine in a couple of days. I've even made it a few nights without having to wake up because I'm coughing or gagging from too much saliva or lack thereof. Yes, things are looking up.
That being said...eating sucks! Every night, I decide on something fabulous I've missed eating and want to try. I sit it in front of me and take in the smell. I get so excited, thinking it's going to be so great eating it again after all this time. I take a bite.... and nothing. It's completely flavorless. Then I'm forced to use water to even get it down. It's just a huge letdown. An hour later, when I've had a kid-size portion of food, I give up and refrigerate the rest.
Today at work I was eating mac and cheese. My coworker, who is a 1.5 year survivor of head and neck cancer, saw me and said, "mmmm.... macaroni and cheese. I bet that slides down easy." Yeah, I guess so. He told me there will come a day when just finding food that slides down easy will make me happy. He says when he goes out to eat with his wife he specifically looks for restaurants with cream soups so that he can have something pleasant to eat. I really doubt that will ever make me happy! This whole ordeal with food is just frustrating. I love good food. I want to be able to taste it and appreciate it again. My coworker has just recently regained taste. I don't want to wait 1-2 years to get my taste back! That's so long! :( I guess I just have to keep reminding myself of the alternative.... having taste and not having done the radiation treatments, which would have certainly killed me within the next few years.... and then I wouldn't really be able to appreciate food anyway, now would I? :\
Saturday, February 27, 2010
I ate a cheeseburger!!!
I've been craving a cheeseburger for the past several days or at least some type of meat. I don't think I've eaten meat in weeks. Things didn't seem to be burning quite as bad today, so when Jake said he was going to pick up McDonalds for dinner, I asked him if he thought I could handle a cheeseburger. We decided it was worth a shot. I took an extra percoset and managed to eat an entire cheeseburger with only a little bit of pain! It took me 40 minutes and two full glasses of water, but I did it...a whole cheeseburger! You wouldn't think someone could be so happy eating McDonalds.
I am in such a great mood now and hopeful for days to come. I definitely need to continue to avoid the types of things that would aggravate mouth sores, like spicy or acidic food, but I have hopes of eating solid food....even if I do have to do a lot of rinsing with water.
Things aren't 100% yet, though. My taste buds are still pretty much shot. I could only barely taste the food and was mainly enjoying the cheeseburger by its smell. I should expect this to continue for the next couple years. I also wouldn't be surprised if when tastes started to come back they were metal-like for a while. That is almost inevitable. It's a bit depressing knowing that I won't be able to really appreciate food for so long. I am just thankful that I may start being able to eat again. I'm just that much closer to being normal again.
I am in such a great mood now and hopeful for days to come. I definitely need to continue to avoid the types of things that would aggravate mouth sores, like spicy or acidic food, but I have hopes of eating solid food....even if I do have to do a lot of rinsing with water.
Things aren't 100% yet, though. My taste buds are still pretty much shot. I could only barely taste the food and was mainly enjoying the cheeseburger by its smell. I should expect this to continue for the next couple years. I also wouldn't be surprised if when tastes started to come back they were metal-like for a while. That is almost inevitable. It's a bit depressing knowing that I won't be able to really appreciate food for so long. I am just thankful that I may start being able to eat again. I'm just that much closer to being normal again.
Thursday, February 25, 2010
I miss eating
I was so excited earlier in the week. I felt like I was making such vast improvements every day. I seem to have reached a plateau now. My mouth sores persist and my saliva remains thick. All of this made the days at Disney get more and more depressing. It was so hard watching Jake enjoy all the fun amusement park food. What I wouldn't have given to have a corn dog or funnel cake or cotton candy. It just hurts so much to put anything in my mouth. Even the Ensure continues to burn. I force myself to chug down ensure or melted shakes/floats. I take a few sips, then have to rinse it with water. It still feels like my mouth is on fire.
I miss eating food so much. I am somewhat of a foodie and not being able to try out new recipes or try new food at restaurants is so aggravating. I haven't had real food in months. I have no idea when my tongue will stop burning, but it better be any day now. I just don't know how much longer I can deal with this.
I guess on the positive side, otherwise I'm feeling pretty good. I'm able to work again which is a nice mental distraction from all of this. I'm able to go the day without spitting too much provided I have my water bottle close by. I get several hours of sleep before waking up needing to spit. My neck is looking a ton better. I should be thankful I've done as well as I have.
I just really hope these mouth sores go away soon. It seems it shouldn't be like this for more than another two weeks, but two weeks is still a really long time. :\
I miss eating food so much. I am somewhat of a foodie and not being able to try out new recipes or try new food at restaurants is so aggravating. I haven't had real food in months. I have no idea when my tongue will stop burning, but it better be any day now. I just don't know how much longer I can deal with this.
I guess on the positive side, otherwise I'm feeling pretty good. I'm able to work again which is a nice mental distraction from all of this. I'm able to go the day without spitting too much provided I have my water bottle close by. I get several hours of sleep before waking up needing to spit. My neck is looking a ton better. I should be thankful I've done as well as I have.
I just really hope these mouth sores go away soon. It seems it shouldn't be like this for more than another two weeks, but two weeks is still a really long time. :\
Saturday, February 20, 2010
Day 1 at Disney
Yesterday went well until we got to the hotel. I managed to make it through the day without too much spitting. When we got to our hotel room I got sick and just needed to lay down. Jake wanted to eat dinner but all the restaurants and room service was closed for the night. Then we found out our reservations were messed up and had us checking out a day early. It was really a nightmare.
Luckily by the morning I was feeling a ton better and we managed to get a room for our last day here. I made it at the park today without too many complications. There were moments of having to spit in the grass at the park, but I was able to ride a few things without getting nauseated. We took it easy and it was nice to be out in the sun and having fun.
My tongue is healing nicely, but there are still open sores that burn when food touches it. I managed a root beer float in the park and then for dinner tonight the family ordered a bunch of pizza. I actually got down about two bites after numbing my mouth with lidocaine and then rinsing it with water. It was nice to have something in my mouth that wasn't ensure or ice cream. I'm hoping the sores continue to heal so I can branch out even more from all the ensure.
Here's to continuing to improve exponentially!
Friday, February 19, 2010
You just beat cancer, what are you going to do now?
I'M GOING TO DISNEYWORLD!
That's right folks. Today Jake and I are leaving to Florida for a fun-filled time of relaxation and Disney characters. This isn't completely out of the blue. This trip has actually been in the works for almost a year. Jake's family is having a reunion of sorts and it was scheduled for this weekend. This weekend was blocked off on my calendar for so long...looming there at the end of treatment. I kept wondering if I'd be well enough to make it. We had plane tickets, but that was it. Only a week ago did I finally call the doggie hotel, get a rental car, get tix to DisneyWorld (at a slight corporate discount - the company I work for just opened a ride there where you do math on a roller coaster, it's called 'the Sum of all Thrills' - how dorky! hehe). Jake's mom got us a room as part of the block rooms for the reunion quite a while ago, so we were all set there as well.
I am really looking forward to a real vacation. I'm still worried how a lot of my lingering side effects will play into all of this. I woke up this morning, realizing my mucus, while still thick, was quite a bit thinner than before, to the point where I could swallow it. It still hurts to swallow, but with cold water it's not too bad. This will be a much better alternative than have a spit cup on the airplane. I'm hoping this also means that I won't feel too bad leaving my suction machine at home. A nurse had suggested getting a doctors note to take the machine to Florida with me. It's only like 5-10 lbs.....but still, it just seemed like it would be a pain.
The thing I'm most worried about is eating though. I haven't eaten a thing but ensure and melted ice cream for the past week or two. I plan to bring some ensure in my checked luggage, but that will only get me so far. With walking around themeparks, I'm going to need more nutrition than my typical 1000 calories per day or so I've been consuming lately. Even if I make sure to down two medium McDonalds shakes a day (~1500 calories), that's not really nutritious. I am pleasantly surprised at how vast the improvements are from day to day. My hope is that by a few days into the trip I'll be able to eat soft foods again. I'm very sad by the fact that the reunion is having a special dinner and brunch that I won't be able to participate in. I'm also sad by the fact that I won't get to eat my way around Epcot. That is one of my favorite things about DisneyWorld, trying all the fabulous foods from around the world. Maybe I'll just have to settle for a world review of ice cream. :\
I guess the last concern is my neck. It is still pretty rough. I was told to wear a "sombrero" by the RO (He thought that was just hilarious, too), but all kidding aside I should wear a large brim hat, to avoid sunlight on the scar, yet not irritating it with scarves. I don't know, though. I'd much rather wear a light scarf than a wide brim hat. A scarf will stay on you while you flipped upside down in a roller coaster. I'm not too sure about a hat. I guess I'll bring both and see what happens. Regardless, there will be lots of sunscreen.
Wow. This has been a long post. I guess I am just very excited and anxious about the trip. Regardless, I am looking forward to a very much deserved vacation. :)
That's right folks. Today Jake and I are leaving to Florida for a fun-filled time of relaxation and Disney characters. This isn't completely out of the blue. This trip has actually been in the works for almost a year. Jake's family is having a reunion of sorts and it was scheduled for this weekend. This weekend was blocked off on my calendar for so long...looming there at the end of treatment. I kept wondering if I'd be well enough to make it. We had plane tickets, but that was it. Only a week ago did I finally call the doggie hotel, get a rental car, get tix to DisneyWorld (at a slight corporate discount - the company I work for just opened a ride there where you do math on a roller coaster, it's called 'the Sum of all Thrills' - how dorky! hehe). Jake's mom got us a room as part of the block rooms for the reunion quite a while ago, so we were all set there as well.
I am really looking forward to a real vacation. I'm still worried how a lot of my lingering side effects will play into all of this. I woke up this morning, realizing my mucus, while still thick, was quite a bit thinner than before, to the point where I could swallow it. It still hurts to swallow, but with cold water it's not too bad. This will be a much better alternative than have a spit cup on the airplane. I'm hoping this also means that I won't feel too bad leaving my suction machine at home. A nurse had suggested getting a doctors note to take the machine to Florida with me. It's only like 5-10 lbs.....but still, it just seemed like it would be a pain.
The thing I'm most worried about is eating though. I haven't eaten a thing but ensure and melted ice cream for the past week or two. I plan to bring some ensure in my checked luggage, but that will only get me so far. With walking around themeparks, I'm going to need more nutrition than my typical 1000 calories per day or so I've been consuming lately. Even if I make sure to down two medium McDonalds shakes a day (~1500 calories), that's not really nutritious. I am pleasantly surprised at how vast the improvements are from day to day. My hope is that by a few days into the trip I'll be able to eat soft foods again. I'm very sad by the fact that the reunion is having a special dinner and brunch that I won't be able to participate in. I'm also sad by the fact that I won't get to eat my way around Epcot. That is one of my favorite things about DisneyWorld, trying all the fabulous foods from around the world. Maybe I'll just have to settle for a world review of ice cream. :\
I guess the last concern is my neck. It is still pretty rough. I was told to wear a "sombrero" by the RO (He thought that was just hilarious, too), but all kidding aside I should wear a large brim hat, to avoid sunlight on the scar, yet not irritating it with scarves. I don't know, though. I'd much rather wear a light scarf than a wide brim hat. A scarf will stay on you while you flipped upside down in a roller coaster. I'm not too sure about a hat. I guess I'll bring both and see what happens. Regardless, there will be lots of sunscreen.
Wow. This has been a long post. I guess I am just very excited and anxious about the trip. Regardless, I am looking forward to a very much deserved vacation. :)
Wednesday, February 17, 2010
Back to work already
Well, I may have done it earlier than I should...but I went back to work today. I really felt pretty great most of the day. The main problem continues to be that my saliva is super thick and mucus-like. I have a hard time swallowing and choke on the mucus. So, I was forced to have a spit cup or Kleenex at my side all day. I kept the spitting down to a minimum and the people around me who had to hear me spitting seemed to understand. It'll be a while before things are back to normal so it seems a shame to stay at home for just the one side effect. I don't know. Maybe I'm just crazy and/or a workaholic.
The day went well. People were really happy I was back. The one program I work on was covered really well while I was out and so I barely had to do a thing with it today. The other program had dozens and dozens of things left for me to take care of, so I was a bit disappointed there. Some things were done by my back-up, but not a lot.
My day-to-day boss remembered that I had said when I come back I might be low on saliva and need water at my side 24/7, so she worked to get me a special water bottle that I could keep in the closed factory area. One of my coworkers heard about the saliva thing and brought me these special super absorbent wipes that could be used instead of like 8 Kleenex. Another coworker offered me her too small clothes since I am now swimming in my work clothes (I ended up netting a loss of 15 lbs). I really feel like people were looking out for me and feel very loved. I really missed my coworkers.
I also had my year review today with my section lead and found out that I was ranked in the topmost percentage of my coworkers. I had one minor negative and a billion positive things said about me. It looks likely that I'll be getting a promotion when those are announced in a month or two. I'm very excited!
All-in-all, it was a very good day. I hope my mucus issue gets even better so I can have an even better day tomorrow. :)
The day went well. People were really happy I was back. The one program I work on was covered really well while I was out and so I barely had to do a thing with it today. The other program had dozens and dozens of things left for me to take care of, so I was a bit disappointed there. Some things were done by my back-up, but not a lot.
My day-to-day boss remembered that I had said when I come back I might be low on saliva and need water at my side 24/7, so she worked to get me a special water bottle that I could keep in the closed factory area. One of my coworkers heard about the saliva thing and brought me these special super absorbent wipes that could be used instead of like 8 Kleenex. Another coworker offered me her too small clothes since I am now swimming in my work clothes (I ended up netting a loss of 15 lbs). I really feel like people were looking out for me and feel very loved. I really missed my coworkers.
I also had my year review today with my section lead and found out that I was ranked in the topmost percentage of my coworkers. I had one minor negative and a billion positive things said about me. It looks likely that I'll be getting a promotion when those are announced in a month or two. I'm very excited!
All-in-all, it was a very good day. I hope my mucus issue gets even better so I can have an even better day tomorrow. :)
Monday, February 15, 2010
You can call me NED
It's good to be done with radiation treatment! I almost cried during treatment I was so happy to be done. The doctor says by the end of next week I will feel like a whole new person. I am looking forward to it!
So does this mean I can finally consider myself in remission? Have I been in remission since surgery? Do I get to finally start my 5-year clock to being considered cancer-free. Has it already been clicking? I still might be in treatment, though. We still don't know about the mop-up chemo. Today I've adopted a new label, NED - No evidence of disease. This is a legitimate way of classifying yourself in the cancer world and that's how I will identify myself for now. I may or may not be in remission. I may or may not be in treatment. I may have to deal with physical and mental issues the rest of my life because of this cancer. That doesn't matter now. The important thing is that right now there is no evidence of the disease and that's the best we can hope for.
The radiation techs let me take home my mask. Hera (our min-pin) is horribly scared of it. Ares (our corgi) felt he had to sniff it out.
So does this mean I can finally consider myself in remission? Have I been in remission since surgery? Do I get to finally start my 5-year clock to being considered cancer-free. Has it already been clicking? I still might be in treatment, though. We still don't know about the mop-up chemo. Today I've adopted a new label, NED - No evidence of disease. This is a legitimate way of classifying yourself in the cancer world and that's how I will identify myself for now. I may or may not be in remission. I may or may not be in treatment. I may have to deal with physical and mental issues the rest of my life because of this cancer. That doesn't matter now. The important thing is that right now there is no evidence of the disease and that's the best we can hope for.
Sunday, February 14, 2010
Flowers Flowers February
Well, Happy Valentine's Day to all of you out there! Jake and I decided a week or two ago that we would postpone Valentine's Day this year. What's the point of going out to a fancy restaurant if I'd just order poached eggs, ice cream, and water? We also figured the flowers would be cheaper.... Well, Jake is too great of a husband and had already ordered my Valentine's Day flowers weeks ago. So yesterday I was surprised with the most beautiful arrangement. (For those of you at my wedding, note the similarities to our wedding bouquet. What a great guy!)
The flowers are now flanked by the other sets of flowers received within the past week or so. Some beautiful lilies from Allison:
And a spring arrangement from my in-laws:
Our house is smelling like a greenhouse! I guess it's just more encouragement knowing that the end is in sight. I've also been overwhelmed with many great cards lately. Keep it up! I love the little bits of encouragement.
That being said, Jake and I still are thinking of leaving town next weekend....so no new flowers for a while, guys. Hehehe. Thanks. :)
The flowers are now flanked by the other sets of flowers received within the past week or so. Some beautiful lilies from Allison:
And a spring arrangement from my in-laws:
Our house is smelling like a greenhouse! I guess it's just more encouragement knowing that the end is in sight. I've also been overwhelmed with many great cards lately. Keep it up! I love the little bits of encouragement.
That being said, Jake and I still are thinking of leaving town next weekend....so no new flowers for a while, guys. Hehehe. Thanks. :)
Saturday, February 13, 2010
1 more to go and feeling pretty good
Well, my vision isn't so blurry anymore, so it's time for a decent post. I woke up this morning feeling relatively well. At this rate, I'll be back to work mid next-week! (I promise I won't go back until I'm ready, though.) I have one little treatment left on Monday and then I'm done (I hope....I still don't know for sure about that whole mop-up chemo bit).
I feel bad, though, because Jake is pretty under-the-weather. I think as he's adjusting his meds it's causing all sorts of bad side effects. Hopefully he gets those straightened up and can get a decent night of sleep. I'm getting used to 2-4 hour segment style of sleeping....it's really not too bad. In Jake's case it's 2-4 hours of sleep at all would seem like a blessing.
I'd say the worst thing going on now is my neck burn. It's all blistered and cracked and gross. It doesn't feel that bad though, just stiff. I mean....I guess I still can't really eat, but that's sorta become the normal. I'm used to waking up, forcing down an ensure, forcing down another one later in the day, etc. I don't want to jinx it, but it doesn't seem to be burning as bad lately, so that's good.
I suppose that's all for today. One more treatment to go and I'm feeling pretty optimistic.
I feel bad, though, because Jake is pretty under-the-weather. I think as he's adjusting his meds it's causing all sorts of bad side effects. Hopefully he gets those straightened up and can get a decent night of sleep. I'm getting used to 2-4 hour segment style of sleeping....it's really not too bad. In Jake's case it's 2-4 hours of sleep at all would seem like a blessing.
I'd say the worst thing going on now is my neck burn. It's all blistered and cracked and gross. It doesn't feel that bad though, just stiff. I mean....I guess I still can't really eat, but that's sorta become the normal. I'm used to waking up, forcing down an ensure, forcing down another one later in the day, etc. I don't want to jinx it, but it doesn't seem to be burning as bad lately, so that's good.
I suppose that's all for today. One more treatment to go and I'm feeling pretty optimistic.
Wednesday, February 10, 2010
Another delay in treatment
Today I sat in the treatment waiting room for over an hour waiting for the machine to be rebooted. It never got up and working, and so I wasn't able to get treatment today. It should be fixed for tomorrow, but this pushes me back until Monday to be done. I am very frustrated and I just want to finish. The vision is still blury or else I'd write more. Good night.
Tuesday, February 9, 2010
Three, it's a magic number
Well... they gave me treatment today. My RO told me to stop being so stoic and tell him if I'm in any pain and we would stop again.
I feel ok enough for now, so we will try to push through to the end.
My vision is blury due to the anti-nausea meds, so this is all I will post today and maybe for a few days.
Thanks everyone for the support. <3
I feel ok enough for now, so we will try to push through to the end.
My vision is blury due to the anti-nausea meds, so this is all I will post today and maybe for a few days.
Thanks everyone for the support. <3
Subscribe to:
Posts (Atom)
