Thursday, July 31, 2008
dog days
These weeks are flying by, even though the days seem slow in the August heat.
I have been feeling so good lately. I didn't realize how awful I felt. I spend about 5 more hours a day awake or at least out of bed than I did a month ago. Its like I'm a totally different person.
I'm even in love with my dog.
She still pees on the floor when she sees anyone, bites holes in the kids shirts, and chews only the boys favorite toys.
But she chases the boys while they call for her and run deliriously down the halls in the hot afternoons. She stays right by their bikes as we ride down to the river to cool off. She follows them into the water and comes out just to shake her hair off on me. She found bubble gum the other day and we laughed till our bellies hurt watching her try to chew it down. She tries all day to make friends with our cat-the cat who picks fights with the great dane across the street.
She also barks every time I hiccup. Whats not to love?
Josh is also a different person. I think he was a little overwhelmed being the dad and the mom and my therapist. Now when he wakes up to pancakes, sausage, and a wife who has already showered and put her make up on by 7 am he looks at me like 'where have you been?' He suddenly has no dishes, laundry, cooking, or cleaning up to do.
Wives are like magic aren't they?
I actually think hes happy for incredibly unselfish reasons. He doesn't like to see me sick.
In other news....my parents have returned home in an unexpected (for me at least) change of assignment (they have been in Chile for a year). We are very happy to have them back and have been spending some time with them.
I will have PET scan results this Wed. afternoon. I think they will be fine or someone would have called me by now.
My house is not selling. We have had lookers but no offers. We don't dare have two mortgage payments in this market, and our contract expires in a couple weeks.
But that dang old house on Center Street haunts me every night.
Thursday, July 17, 2008
what the dr. ordered
Long, boring, and poorly written. But this explains my behavior:
When I met with the oncologist for the first time after my surgeries to discuss interferon (the medicine Ive been taking) they were like, "Just do as much of the year that you can. Its a rough treatment. We know the first month is the most important, and then see what you can do after that." And I was all what are they thinking, that I wont make it a year? Impossible. That I wouldn't do whatever it takes for however long to save my life? Ridiculous. That I'm not going to fight to the end? Insulting.
They saw right through the newly-diagnosed-cancer-patient strait to the me 8 months later who came stumbling into the office, emotional, tired, confused, and asking "how much of this can I take?"
The fatigue had been getting worse and worse. Long naps. No energy. Sleeping way late. Luke, who has been pulling me out of bed, has added to his morning routine getting me a Mountain Dew from the pantry to wake me up (I never touched the stuff before, but I seriously had to wait to kick in to get out of bed.) They are sick of their 'meth mom' as I like to call it. I was like some zombie, and sure the cancer had come back because I had gotten so much worse in the last month.
Well the Dr.s were just like, "this is what happens, you made it longer than most people do, they just get to a point where you cant handle it, and we take you off."
A few random facts about interferon:
*It only helps about 10% of those who take it, although they think it does give you more time before (and of course if) the cancer comes back
*They are studying right now the effectiveness of a years worth of treatment. They do know that the first month helps, and that without the first month (of daily IV treatments) there is not a benefit. Basically, one of my nurses was like, "it wouldn't seem right to be sick for 4 more months to get one more month of life."
*What its doing is making my immune system work harder to get rid of the cancer (melanoma your body recognizes as foreign and will try and fight off. From what I understand this is not the case with most cancers?)
*Its also made me that psych patient they wrote me prescriptions for and laughed in their face. Now its like, "No Alisa. We cant triple your ativan."
*I hate this drug and wouldn't inject it in a rat I disliked. Even if he had cancer.
So the oncologists are all, "You need to take a month off. We can decide if you want to start back in a month with a lower dose. You don't need to get back on it, we don't know for sure its even helping that much."
I was shocked. Mostly because I started talking like those other I people I read about who went through cancer treatments. "So I could be done? What would I do then? You dont understand, I have a house keeper right now. Also an excuse for everything. No one expects anything out of me. Its what Im used to now, I don't know if I'm ready to get back to normal. etc."
As I was talking to her I was falling asleep (being my normal nap time). Shes like, "your getting off the treatments, (but not your psych meds) and I'm calling a taxi to take you home."
I also saw my surgeon for my mole checks, and he agreed. He said as much as they care about my life, I also need to live it. He says don't go back on, you've done a great job, etc. Dont feel guilty about stopping, we don't know how effective it is long term. And your moles look fine.
So Ive been off for a week.
I wake up 3 hours earlier. I don't take naps. I don't even take ativan. I haven't had caffeine all day. Im stuffing my face. Cleaning the house. Making breakfast. Walking the dog. I'm on top of my laundry right now.
Its so nice to know that under those drugs is just....me. I'm still here.
Although the energy is not back to pre cancer (they say a month of recovery), I don't think Ill use it all when it returns. I want to keep some for myself.
I kind of think this why women can only be pregnant for 9 months, its just all you take of feeling like crap (Ill insert here that I have been pregnant for 9 and 1/2 months and the last two weeks were BAD). You do get a new baby at the end of that, but Im looking at it as giving life to myself (or I guess a 10% chance).
So anyway, they want me to have another scan beginning of August. And I am probably done with cancer treatments.
Now what?
When I met with the oncologist for the first time after my surgeries to discuss interferon (the medicine Ive been taking) they were like, "Just do as much of the year that you can. Its a rough treatment. We know the first month is the most important, and then see what you can do after that." And I was all what are they thinking, that I wont make it a year? Impossible. That I wouldn't do whatever it takes for however long to save my life? Ridiculous. That I'm not going to fight to the end? Insulting.
They saw right through the newly-diagnosed-cancer-patient strait to the me 8 months later who came stumbling into the office, emotional, tired, confused, and asking "how much of this can I take?"
The fatigue had been getting worse and worse. Long naps. No energy. Sleeping way late. Luke, who has been pulling me out of bed, has added to his morning routine getting me a Mountain Dew from the pantry to wake me up (I never touched the stuff before, but I seriously had to wait to kick in to get out of bed.) They are sick of their 'meth mom' as I like to call it. I was like some zombie, and sure the cancer had come back because I had gotten so much worse in the last month.
Well the Dr.s were just like, "this is what happens, you made it longer than most people do, they just get to a point where you cant handle it, and we take you off."
A few random facts about interferon:
*It only helps about 10% of those who take it, although they think it does give you more time before (and of course if) the cancer comes back
*They are studying right now the effectiveness of a years worth of treatment. They do know that the first month helps, and that without the first month (of daily IV treatments) there is not a benefit. Basically, one of my nurses was like, "it wouldn't seem right to be sick for 4 more months to get one more month of life."
*What its doing is making my immune system work harder to get rid of the cancer (melanoma your body recognizes as foreign and will try and fight off. From what I understand this is not the case with most cancers?)
*Its also made me that psych patient they wrote me prescriptions for and laughed in their face. Now its like, "No Alisa. We cant triple your ativan."
*I hate this drug and wouldn't inject it in a rat I disliked. Even if he had cancer.
So the oncologists are all, "You need to take a month off. We can decide if you want to start back in a month with a lower dose. You don't need to get back on it, we don't know for sure its even helping that much."
I was shocked. Mostly because I started talking like those other I people I read about who went through cancer treatments. "So I could be done? What would I do then? You dont understand, I have a house keeper right now. Also an excuse for everything. No one expects anything out of me. Its what Im used to now, I don't know if I'm ready to get back to normal. etc."
As I was talking to her I was falling asleep (being my normal nap time). Shes like, "your getting off the treatments, (but not your psych meds) and I'm calling a taxi to take you home."
I also saw my surgeon for my mole checks, and he agreed. He said as much as they care about my life, I also need to live it. He says don't go back on, you've done a great job, etc. Dont feel guilty about stopping, we don't know how effective it is long term. And your moles look fine.
So Ive been off for a week.
I wake up 3 hours earlier. I don't take naps. I don't even take ativan. I haven't had caffeine all day. Im stuffing my face. Cleaning the house. Making breakfast. Walking the dog. I'm on top of my laundry right now.
Its so nice to know that under those drugs is just....me. I'm still here.
Although the energy is not back to pre cancer (they say a month of recovery), I don't think Ill use it all when it returns. I want to keep some for myself.
I kind of think this why women can only be pregnant for 9 months, its just all you take of feeling like crap (Ill insert here that I have been pregnant for 9 and 1/2 months and the last two weeks were BAD). You do get a new baby at the end of that, but Im looking at it as giving life to myself (or I guess a 10% chance).
So anyway, they want me to have another scan beginning of August. And I am probably done with cancer treatments.
Now what?
Sunday, July 6, 2008
turning pages
My sister is having a baby this week, and as mine just turned three, I'm giving her the furniture in my nursery.
Its always been a favorite room in the house. Not because of the rug which is one of my best finds ever, or the changing table Josh and I made from a desk top, or the perfect blue/green paint color we ended up with after several coats, or the view of the rocky garden steps that are literaly a few feet away. Like you could at anytime open the window and pick some fresh peas or pansies if you had the inkling.
I love the room best because my babies slept there. And woke up there. And made me so happy there.
Josh disassembled the crib, screws, bolts, springs. It was like pushing rewind on the day he set it up.
When he was done, I laid in the empty spot and bawled my eyes out.
After a thunderstorm rolled by and I had a good cry, I asked Josh to help me carry out my hope chest to the garden......for a bonfire.
He refused without laughing.
p.s. I also bawled today when the gorgeous Roger Federer lost at Wimbeldon. I think I'm just generally overreacting.
Its always been a favorite room in the house. Not because of the rug which is one of my best finds ever, or the changing table Josh and I made from a desk top, or the perfect blue/green paint color we ended up with after several coats, or the view of the rocky garden steps that are literaly a few feet away. Like you could at anytime open the window and pick some fresh peas or pansies if you had the inkling.
I love the room best because my babies slept there. And woke up there. And made me so happy there.
Josh disassembled the crib, screws, bolts, springs. It was like pushing rewind on the day he set it up.
When he was done, I laid in the empty spot and bawled my eyes out.
After a thunderstorm rolled by and I had a good cry, I asked Josh to help me carry out my hope chest to the garden......for a bonfire.
He refused without laughing.
Luke in the perfect light next to the window. I used to wake up and hurry into his room saying "good morning gorgeous!" This was one of his first complete sentences, and he started daily complimenting ME when I walked in in my pjs and morning hair with "good morning gorgeous!"
p.s. I also bawled today when the gorgeous Roger Federer lost at Wimbeldon. I think I'm just generally overreacting.
Friday, July 4, 2008
the american dream. or nightmare.
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