Sorry for the lateness of this post. I've been wheeled to every corner of this hospital having tests done to establish a base line for Dr. Thomas to work from. I had an echo cardiogram in which I saw the end of my catheter bouncing around in my heart. It was creepy to say the least and in addition to that, my heart looked like a clapping fetus from one angle. Creepy.
I had a lumbar puncture that finished up around 2:15 and since I'd been given a lovely bag of ativan prior to the procedure, I was inclined to sleep for the rest of the afternoon. That was my first dose of intrathecal chemo. I believe it was methyltrexate flavored.
The rest of the chemo should be coming up any time now. I think we're just waiting on the pharmacy. Since these doses are so much more potent than the first ones, I'm not sure of how I'll be feeling later.
Dinner just arrived. Something in brown sauce with a side of cream gravy, I believe.
Thursday, July 3, 2008
Wednesday, July 2, 2008
Starting Over Again
Day 2
Side Note:
Little Wooden Boy M.D.
Call Hula Hula, or the King and get my number. I would like to talk to you again.
We could use another friend right now.
Chris
Side Note:
Little Wooden Boy M.D.
Call Hula Hula, or the King and get my number. I would like to talk to you again.
We could use another friend right now.
Chris
I saw my leukemia doctor a little while ago and she outlined a preliminary plan while test results are still pending. Let me reiterate: a lot of tests are still pending.
As it stands, it looks like this is a relapse. It's just presenting in a different way. A pathologist detected the t(4;11) translocation on my chromosomal test. This means that I will eventually have to have another transplant. We'll cross that road when we get to it.
Dr. Thomas wants to start chemotherapy tomorrow. I'll be doing a more intense version of Hyper-CVAD with the addition of one more carrying agent. I can't remember its name right now. I'm scheduled to get a new picc line put in my arm later today. This time around I was given the choice between a central line or a picc line. Not a hard decision.
I really appreciate all of the comments and the support. Don't count me out. I'll leave you with a funny anecdote my dad used to tell me about when I was a baby.
Years ago when we were living in Thailand and I was one or two I stopped breathing and started turning purple and blue. My terrified parents rushed me to the army base hospital . The staff doctor examined me and informed my dad that nothing was wrong with me. My dad was a blunt New Englander who wasn't afraid of confrontation. (Now you know where I get it from.) He insisted that the doctor check again. Begrudgingly, he did and returned with the same diagnosis. This time my dad cornered him and said, "Bullshit, check her again." The doctor checked me a third time and by now his hackles were up. He came out and confronted my dad, saying, "The only thing wrong with your kid is that she's an asshole. Now go home."
It turns out that I was holding my breath until I turned purple because I was throwing a tantrum. When I was out of sight of my parents and with the doctor, I breathed normally. Hehe.
Moral of the story is that I'm tenacious and as far as this cancer is concerned, it can kiss my purple bottom.
As it stands, it looks like this is a relapse. It's just presenting in a different way. A pathologist detected the t(4;11) translocation on my chromosomal test. This means that I will eventually have to have another transplant. We'll cross that road when we get to it.
Dr. Thomas wants to start chemotherapy tomorrow. I'll be doing a more intense version of Hyper-CVAD with the addition of one more carrying agent. I can't remember its name right now. I'm scheduled to get a new picc line put in my arm later today. This time around I was given the choice between a central line or a picc line. Not a hard decision.
I really appreciate all of the comments and the support. Don't count me out. I'll leave you with a funny anecdote my dad used to tell me about when I was a baby.
Years ago when we were living in Thailand and I was one or two I stopped breathing and started turning purple and blue. My terrified parents rushed me to the army base hospital . The staff doctor examined me and informed my dad that nothing was wrong with me. My dad was a blunt New Englander who wasn't afraid of confrontation. (Now you know where I get it from.) He insisted that the doctor check again. Begrudgingly, he did and returned with the same diagnosis. This time my dad cornered him and said, "Bullshit, check her again." The doctor checked me a third time and by now his hackles were up. He came out and confronted my dad, saying, "The only thing wrong with your kid is that she's an asshole. Now go home."
It turns out that I was holding my breath until I turned purple because I was throwing a tantrum. When I was out of sight of my parents and with the doctor, I breathed normally. Hehe.
Moral of the story is that I'm tenacious and as far as this cancer is concerned, it can kiss my purple bottom.
Tuesday, July 1, 2008
Breaking Dreams at the Point of Departure
Day 0
The clock is reset, and the world rushes backwards, undoing all progress fair and poor. The kingdom of disease is restored and hope for the future is dim. We have arrived at a point not very much unlike where we began our journey in 2007.
Each and every day since Ann first became sick I would routinely pray to Jesus for help, mercy, salvation, or whatever he was willing to provide. As a "good christian" God should look out for me and the ones I love, right? As if to answer that question we were handed a diagnosis for a new type of leukemia today. My faith and belief has collapsed into a unrecognizable heap and I don't feel like picking it up again.
I have had enough of prostrating myself and begging for what little mercy I think Ann and I deserve. I reject the notion of a creator with a grand plan for us. Things like cancer don't "happen for a reason", there is no "Grand Plan". Fame, fortune, sickness and health are not handed out based on virtue, need, suffering, or humility. All you have to do is turn on the news or watch some TV to prove that.
There is no anthropomorphic deity with a flowing gray beard looking down on us from the clouds. Conversely there is no red-guy with horns poking people with pitch forks and challenging them to fiddle contests. Neither of them is counting the number of things we do good or bad to determine what our future address is going to be afterlife. I reject all of it. Most of all I reject the notion of an all powerful and loving being who has decided his plan for us involves nothing but suffering and continuously breaking our dreams.
I know some of you will say "It's OK if you don't belive in God. He loves you anyway". Fine, I say, let him prove it. Sorry if I offended some of you in the audience.
On to more tangible business at hand:
Our house deal has officially collapsed. After the news hit today I called and withdrew from the contract. I hope the sellers do not sue me into completing the sale, or for penalties (about $35K). Ann will not be painting the back bedroom that nice shade of buff she liked so much. I will not be sealing the ceramic tile in the kitchen, or putting up my cast iron pot rack. Our new stainless steel side-by-side fridge has been returned to Home Depot. The movers have been called and they will not be moving all of our possessions out of storage.
Ann had a little garden planned for the side yard with ferns, hostas and coleus. There was going to be a nice gate with a nice shady place to sit and plently of roaming around space for a garden cat or two. Her pots will now remain empty and stored at Dixie's house.
Ann will not be going back to LSU this semester. She will not be able to start looking for a job and getting back to work like she so very much wanted to do.
Our three kitties Jay, Etsuko and Squeeze will have to do without us again. A very big thank you to Dixie for taking such good care of them.
Our plans for adoption and starting a family will now have to be shelved again. It will now be a minimum of 4 years before we can even begin thinking about it.
I have asked for a transfer from the Jacobs Engineering office in Baton Rouge to the one in Houston. I do not know if Houston has an open position or me or even if they have work to do.
Lastly I called and cancled the purchase of our new car. We were going to get a British Racing Green MINI Cooper with a white top named "Oliver", after the 1964 Opel Kadet in Top Gear with the same name. Oliver was due to be delivered in the middle of the month and had almost finished his trip across the Atlantic from the UK. Luckily, with gas prices the way they are now, I doubt the dealership will have trouble selling it.
In Medical News:
Ann is going back under the care of Dr. Deborah Thomas in the Leukemia Department. Stem Cell Transplant has offically dropped us like a hot potato. I guess that says just about everything you need to know about the situation. It looks grim.
The clock is reset, and the world rushes backwards, undoing all progress fair and poor. The kingdom of disease is restored and hope for the future is dim. We have arrived at a point not very much unlike where we began our journey in 2007.
Each and every day since Ann first became sick I would routinely pray to Jesus for help, mercy, salvation, or whatever he was willing to provide. As a "good christian" God should look out for me and the ones I love, right? As if to answer that question we were handed a diagnosis for a new type of leukemia today. My faith and belief has collapsed into a unrecognizable heap and I don't feel like picking it up again.
I have had enough of prostrating myself and begging for what little mercy I think Ann and I deserve. I reject the notion of a creator with a grand plan for us. Things like cancer don't "happen for a reason", there is no "Grand Plan". Fame, fortune, sickness and health are not handed out based on virtue, need, suffering, or humility. All you have to do is turn on the news or watch some TV to prove that.
There is no anthropomorphic deity with a flowing gray beard looking down on us from the clouds. Conversely there is no red-guy with horns poking people with pitch forks and challenging them to fiddle contests. Neither of them is counting the number of things we do good or bad to determine what our future address is going to be afterlife. I reject all of it. Most of all I reject the notion of an all powerful and loving being who has decided his plan for us involves nothing but suffering and continuously breaking our dreams.
I know some of you will say "It's OK if you don't belive in God. He loves you anyway". Fine, I say, let him prove it. Sorry if I offended some of you in the audience.
On to more tangible business at hand:
Our house deal has officially collapsed. After the news hit today I called and withdrew from the contract. I hope the sellers do not sue me into completing the sale, or for penalties (about $35K). Ann will not be painting the back bedroom that nice shade of buff she liked so much. I will not be sealing the ceramic tile in the kitchen, or putting up my cast iron pot rack. Our new stainless steel side-by-side fridge has been returned to Home Depot. The movers have been called and they will not be moving all of our possessions out of storage.
Ann had a little garden planned for the side yard with ferns, hostas and coleus. There was going to be a nice gate with a nice shady place to sit and plently of roaming around space for a garden cat or two. Her pots will now remain empty and stored at Dixie's house.
Ann will not be going back to LSU this semester. She will not be able to start looking for a job and getting back to work like she so very much wanted to do.
Our three kitties Jay, Etsuko and Squeeze will have to do without us again. A very big thank you to Dixie for taking such good care of them.
Our plans for adoption and starting a family will now have to be shelved again. It will now be a minimum of 4 years before we can even begin thinking about it.
I have asked for a transfer from the Jacobs Engineering office in Baton Rouge to the one in Houston. I do not know if Houston has an open position or me or even if they have work to do.
Lastly I called and cancled the purchase of our new car. We were going to get a British Racing Green MINI Cooper with a white top named "Oliver", after the 1964 Opel Kadet in Top Gear with the same name. Oliver was due to be delivered in the middle of the month and had almost finished his trip across the Atlantic from the UK. Luckily, with gas prices the way they are now, I doubt the dealership will have trouble selling it.
In Medical News:
Ann is going back under the care of Dr. Deborah Thomas in the Leukemia Department. Stem Cell Transplant has offically dropped us like a hot potato. I guess that says just about everything you need to know about the situation. It looks grim.
We just saw Dr. Anderlini. I have not relapsed, but I have developed a new form of ALL related to my PTLD. I'm showing 7% blasts in my marrow and 31% in my blood. I don't quite know what to say since I didn't even know it was a possibility. I'm scheduled to see my leukemia doctor sometime today to get an idea of what the treatment will involve. There may be Rituxan, and there will definitely be chemotherapy.
That's all I know. I'll post more as I get more info. As for the house; we're going to have to break the contract since it looks like we'll be relocating to Houston once again. I don't know how long we'll have to be here and I don't know whether I'll still be considered a transplant patient. Like I said, I'll post more when I know something.
That's all I know. I'll post more as I get more info. As for the house; we're going to have to break the contract since it looks like we'll be relocating to Houston once again. I don't know how long we'll have to be here and I don't know whether I'll still be considered a transplant patient. Like I said, I'll post more when I know something.
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