Well, apparently I was feeling a little cocky about the vomiting last week because on Sunday it stood up, knocked me square on the ass and said "Hey, remember me? Don't think you are getting off that easily!"
On Sunday I woke up feeling very good and decided that I would switch to taking my nausea medication from every 6 hours to "as needed". Why not try every 8 or 10 hours you ask. Well, I was feeling cocky that's why. So now finally three days later I'm starting to bounce back.
Right now I am still on some pretty heavy duty pain medication, in the form of patches. I change the patches every 72 hours. At the worst I was at 75 micrograms and taking vicadin. First I cut back on the vicadin, then I've slowly been decreasing the strength of the patch. One of the joys of pain medication this strong is that you have to step down how much you are taking. If you go too fast all sorts of fun things can happen like hallucinations. Though that sounds fun I had plenty while doped up in the hospital I don't need to go back anytime soon. Seriously feeling people touch you when no one is in the room not a comforting feeling. I digress. I have cut back to 37 micrograms. Tonight is a patch change night and most of the dinner (Grilled Salmon and tater tots by mouth not tube!!!) conversation focused on whether I would go down to 12 or 25 micrograms.
The conversation at dinner started with discussing how in the next 10 days I would be ready to return to Houston and watch Baby Chang all day by myself. I thought that by now I would be ready to take on night time duties but I am still pumping food through the tube each night. Not exactly conducive with a 10 month old who doesn't sleep through the night.
Dad Chang is convinced I need to go to 12 mg, Mom Chang 25 mg, me I'm on the fence. They are both convinced that each time I relapse is right after I change the patch. Though there is a partial pattern I'm not convinced entirely even though I know one of the side effects is nausea/vomiting. In my world if vomiting is listed as a side effect I seem to be right there waving to the porcelain gods. So the idea of getting off the constipation, vomit inducing pain meds is extremely attractive, going too fast is extremely scary. I was hoping writing this would sway me one way or the other but alas the fence has only gotten more in the way (did I just mix metaphors?).
In other news the weather in Denver finally gave us a brilliant sunny day. At 81 degrees we got to spend time in the garden. Baby Chang got over her fear of grass and turf. Yes, believe it or not there is a turf putting green that Dad Chang put in the back yard. A retirement present. Sadly the gardening was enough to put me back in bed for a couple hours but the vitamin D did wonders for my mood and apparently Baby Changs.
Tomorrow is a day for swimsuit shopping. I've been attempting since I first got here to find something suitable but I've struck out. I'm hoping to be able to take Baby Chang swimming with her cousin and Aunt on Thursday. It doesn't really matter what size you are swimsuit shopping blows! In fact getting skinnier hasn't made any shopping easier. It has just made life more fun to say "I had to return size 4 jeans because they were too big." Don't hate me it was the brand. My new pants which fit snuggly are definitely size 6 petite (getting skinnier does make you shorter apparently).
So you'll have to wait with baited breath to see 1. which patch to I switch to and 2. does she find a swimsuit!
Tuesday, March 30, 2010
Friday, March 26, 2010
It was the best of times, it was the worst of times
I think that title sums up the last year in the best possible way. Today I turn 35 and looking back it has been one hell of a year. However, I'm not sure I would change anything, except maybe a little less vomiting...
I'm positive you are thinking to yourself "Yeah right you wouldn't change anything?!" I've been thinking about it a lot today and really I wouldn't change it.
This year brought the most amazing experience of my life and that is the birth of my daughter. Everyday I get to explore the world through her eyes. She makes me smile, laugh and cry all at the same time. Today she is on the verge of walking and sleeping through the night. She exclaims "Hi" and her smile lights up the room when I walk in, even if I went no further than the bathroom. Her fierce independence is astounding and frightening all at the same time. I like to believe her love for all things musical (especially commercial jingles) is a result of listening to opera for nine months. It has been a change I never could have imagined and I look forward to all that are still to come.
This blog exists because this year brought about the worst experience of my life as well. The day I was diagnosed with cancer will be one I will never forget. Though the treatment and recovery have been miserable they too brought about a change in my life I could never have imagined. I am closer today to my parents as a result of the last three months. I always new they were pretty amazing but I don't think I ever acknowledged it as I should have. Imagine giving up your life, leaving your home and for three months taking care of someone else and their child. Could you be that selfless even if it is your child?
Since December 3, they have only asked one thing "What do you need?". My Mom hasn't slept through the night since the beginning of January as she has taken the night shift with Baby Chang. My Dad has made numerous trips to pharmacies, doctors and hospitals, cleaned up after many vomiting episodes, and tracked and researched my medication. Still neither one has asked that they be put first.
In addition to how amazing my parents have been there are many others who have been just as incredible. Relatives who call and text and relive their own cancer experiences to make sure I'm okay. Friends who bring by dinner so no one has to cook. Loved ones who send cards and letters that just say "I'm thinking of you." All people who I knew would be there but now it's different somehow in a way I can't really explain.
My recovery is going well. As of today it has been six days since I have thrown up. I am eating more and more everyday and water finally tastes like water again. I am walking 15 minutes each day (when it isn't snowing) and hope to be up to 30 by the time I return to Houston.
Do I wish I hadn't had cancer? YES. Would I change it? Not if it meant giving up what I now have, a knowledge and insight that is worth more than all the money in the world.
Who knows what the next year will bring, hopefully a little more wisdom and a lot less throwing up.
I'm positive you are thinking to yourself "Yeah right you wouldn't change anything?!" I've been thinking about it a lot today and really I wouldn't change it.
This year brought the most amazing experience of my life and that is the birth of my daughter. Everyday I get to explore the world through her eyes. She makes me smile, laugh and cry all at the same time. Today she is on the verge of walking and sleeping through the night. She exclaims "Hi" and her smile lights up the room when I walk in, even if I went no further than the bathroom. Her fierce independence is astounding and frightening all at the same time. I like to believe her love for all things musical (especially commercial jingles) is a result of listening to opera for nine months. It has been a change I never could have imagined and I look forward to all that are still to come.
This blog exists because this year brought about the worst experience of my life as well. The day I was diagnosed with cancer will be one I will never forget. Though the treatment and recovery have been miserable they too brought about a change in my life I could never have imagined. I am closer today to my parents as a result of the last three months. I always new they were pretty amazing but I don't think I ever acknowledged it as I should have. Imagine giving up your life, leaving your home and for three months taking care of someone else and their child. Could you be that selfless even if it is your child?
Since December 3, they have only asked one thing "What do you need?". My Mom hasn't slept through the night since the beginning of January as she has taken the night shift with Baby Chang. My Dad has made numerous trips to pharmacies, doctors and hospitals, cleaned up after many vomiting episodes, and tracked and researched my medication. Still neither one has asked that they be put first.
In addition to how amazing my parents have been there are many others who have been just as incredible. Relatives who call and text and relive their own cancer experiences to make sure I'm okay. Friends who bring by dinner so no one has to cook. Loved ones who send cards and letters that just say "I'm thinking of you." All people who I knew would be there but now it's different somehow in a way I can't really explain.
My recovery is going well. As of today it has been six days since I have thrown up. I am eating more and more everyday and water finally tastes like water again. I am walking 15 minutes each day (when it isn't snowing) and hope to be up to 30 by the time I return to Houston.
Do I wish I hadn't had cancer? YES. Would I change it? Not if it meant giving up what I now have, a knowledge and insight that is worth more than all the money in the world.
Who knows what the next year will bring, hopefully a little more wisdom and a lot less throwing up.
Thursday, March 18, 2010
The Good, The Bad and The Ugly
Warning this post may include TOO MUCH INFORMATION for some.
I have been waiting to post until I had a few more things to place in the Good Category so here it goes....
GOOD: Treatment is over!
BAD: Some days I still throw up.
UGLY: Even the throwing up is not as bad as the constipation.
GOOD: The ENT said my nasopharynx looks really good.
BAD: We won't know more until the CT Scan on April 12.
UGLY: We won't really know how things look until the PET Scan in May or June.
GOOD: I've lost 30lbs going through all of this.
BAD: None of my clothes fit.
UGLY: I look like the Saggy Baggy Elephant (one of my favorite books as a kid). My butt and boobs hang too low...
GOOD: I can eat solid food.
BAD: My salivary glands are shot so what I can eat is very limited and small in quantity.
UGLY: Some of it leaks out from around my feeding tube.
GOOD: I'm in Denver continuing my recovery until mid April.
BAD: My butt still hurts from sitting in the car for three days.
UGLY: It's supposed to snow tonight.
GOOD: I get to hang out with my sister and her kids.
BAD: They are all sick.
UGLY: We are just waiting for Baby Chang to get sick.
GOOD: I am taking a few more weeks off from work.
BAD: I am taking a few more weeks off from work.
UGLY: My checking account.
GOOD: I took a two hour nap with Baby Chang today.
BAD: Baby Chang took a two hour nap today will she sleep tonight?
UGLY: Baby Chang doesn't take naps in her own bed thanks to Grandma Chang and Mr. Chang.
I have been waiting to post until I had a few more things to place in the Good Category so here it goes....
GOOD: Treatment is over!
BAD: Some days I still throw up.
UGLY: Even the throwing up is not as bad as the constipation.
GOOD: The ENT said my nasopharynx looks really good.
BAD: We won't know more until the CT Scan on April 12.
UGLY: We won't really know how things look until the PET Scan in May or June.
GOOD: I've lost 30lbs going through all of this.
BAD: None of my clothes fit.
UGLY: I look like the Saggy Baggy Elephant (one of my favorite books as a kid). My butt and boobs hang too low...
GOOD: I can eat solid food.
BAD: My salivary glands are shot so what I can eat is very limited and small in quantity.
UGLY: Some of it leaks out from around my feeding tube.
GOOD: I'm in Denver continuing my recovery until mid April.
BAD: My butt still hurts from sitting in the car for three days.
UGLY: It's supposed to snow tonight.
GOOD: I get to hang out with my sister and her kids.
BAD: They are all sick.
UGLY: We are just waiting for Baby Chang to get sick.
GOOD: I am taking a few more weeks off from work.
BAD: I am taking a few more weeks off from work.
UGLY: My checking account.
GOOD: I took a two hour nap with Baby Chang today.
BAD: Baby Chang took a two hour nap today will she sleep tonight?
UGLY: Baby Chang doesn't take naps in her own bed thanks to Grandma Chang and Mr. Chang.
Sunday, March 7, 2010
The Long and Winding Road
Patience hasn't always been my strongest of virtues and right now I'm struggling. I was warned repeatedly that the recovery would take a very long time. For some with head and neck cancers it has taken years to make a full recovery. Not being able to eat foods I love, being very tired, and being on medications really aren't getting to me but throwing up that's another story...
I had a slide backwards last week when I began throwing up again. Most mornings I would feel fine then all of a sudden around 4:30 the nausea would hit. I'd throw up until 1:00 a.m., go to bed and feel okay in the morning. Finally on Friday (Dad Chang's Birthday)I gave in and went and got fluid at the Oncologists office. Four hours later I was feeling a bit better. Yesterday was a good day and today seems even better.
I'm doing a lot of finger crossing that this is the start of many good days to come. In fact I have been able to start eating solid foods. They don't quite taste the way they used to but that will come. So far I've had lasagna, chicken noodle soup, fruit loops and jello. I've been able to drink G2 Gatorade, Sprite and juice, water still tastes terrible. It is now a battle to just get in enough calories as I've lost nearly 30 pounds since this all began. I may have to start a "Buy Mr. Chang some Jeans that Fit" collection... It's amazing how bony my butt has become.
On Thursday I head back to the ENT for a scope of my nasopharynx to make sure everything is looking good. In April I'll have a CT Scan of my head and neck to get a better picture of the prognosis. Right now everyone is pretty confident that there will be no surprises and that the treatment has done what it's supposed to have done.
Well, I'm off to see what kind of trouble Baby Chang is getting herself into. Please keep your fingers crossed that the vomitting has ceased 11 months has been more than enough.
I had a slide backwards last week when I began throwing up again. Most mornings I would feel fine then all of a sudden around 4:30 the nausea would hit. I'd throw up until 1:00 a.m., go to bed and feel okay in the morning. Finally on Friday (Dad Chang's Birthday)I gave in and went and got fluid at the Oncologists office. Four hours later I was feeling a bit better. Yesterday was a good day and today seems even better.
I'm doing a lot of finger crossing that this is the start of many good days to come. In fact I have been able to start eating solid foods. They don't quite taste the way they used to but that will come. So far I've had lasagna, chicken noodle soup, fruit loops and jello. I've been able to drink G2 Gatorade, Sprite and juice, water still tastes terrible. It is now a battle to just get in enough calories as I've lost nearly 30 pounds since this all began. I may have to start a "Buy Mr. Chang some Jeans that Fit" collection... It's amazing how bony my butt has become.
On Thursday I head back to the ENT for a scope of my nasopharynx to make sure everything is looking good. In April I'll have a CT Scan of my head and neck to get a better picture of the prognosis. Right now everyone is pretty confident that there will be no surprises and that the treatment has done what it's supposed to have done.
Well, I'm off to see what kind of trouble Baby Chang is getting herself into. Please keep your fingers crossed that the vomitting has ceased 11 months has been more than enough.
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