Jazz's birthday was nice. We had pizza, which he was thrilled about. (He yells "Peets! Peets!") His favorite toy was three helium balloons, that he carried around the house until they deflated. We haven't really gotten to play outside this last week, but it's looking like this afternoon we'll finally get out in the sunshine! I'm certainly looking forward to it, now that I'm starting to feel a little better after Thursday's chemo.
I have an appointment at the BMT clinic on Wednesday afternoon. This should be the one where we start to schedule scans and tests. Hopefully we'll get some sort of game plan or time line. I'm very interested to know more about what happens with an allogenic transplant. I find that the more details I know, the less anxiety I have about it all. And I have, as you may imagine, been very anxious. Panic sets in when my mind wanders in the evening.
I'm definitely getting nervous, but as my doctor said on Thursday, "we have to strike while the iron's hot." The chemo regimen we've been using seems to be doing a good job at shrinking the tumors, or at least keeping them at bay. So we have to get this transplant started soon.
I don't think I'll ever be ready. But I know that it will all just be an unpleasant memory soon.
Sunday, March 9, 2014
Saturday, March 1, 2014
The dude
Thankfully, there's not a lot to report on the treatment front. This is my "off week", so on Friday it was just an office visit, blood work and a Neupogen injection. My doctor here in town asked me to go ahead and schedule a visit for the week after next with the BMT clinic in KC to start scheduling scans and get this thing going. So despite the fatigue, despite the weakness, I'm enjoying feeling pretty okay and just spending time with my family.
Which brings me to the important news: My little dude turns TWO on Tuesday! I can barely believe it. He's doing such a great job. This kid. Jasper. God, he's just the coolest. He's easy to laugh and will dance to any music, he's tough and strong, he's stubborn and emotional and full of fire and spirit. He has a great sense of humor. He's playful and loving and so skinny and tall. And now he's almost two years old and I'm just so proud of him. So many people lament their children growing up, and I can't wrap my mind around that mindset. It's what they're meant to do. And they do it so well if we let them. Each stage of of childhood has it's more enjoyable and less enjoyable aspects, but each stage is so neat to watch unfold. His communication, understanding, and curiosity are so fun to watch blossom. But with all of that comes the melt-downs and big emotions of a human trying to let you know what they want, but not understanding why they can't always have it.
So we'll have a little family get together tomorrow. Low-key, a couple presents to unwrap, a cake with Curious George on it. Ice cream. Then we'll have a play date with his best baby buddy Henry (My best friend Kelsey's little boy) on Tuesday. And I'll keep breathing in his smell and kissing his cheeks even though he growls and turns away with a smile. And I will take every moment with him in. Because soon, I'll be going a month without him, and I need all of the playtime and giggles and wonderful memories I can get.
Which brings me to the important news: My little dude turns TWO on Tuesday! I can barely believe it. He's doing such a great job. This kid. Jasper. God, he's just the coolest. He's easy to laugh and will dance to any music, he's tough and strong, he's stubborn and emotional and full of fire and spirit. He has a great sense of humor. He's playful and loving and so skinny and tall. And now he's almost two years old and I'm just so proud of him. So many people lament their children growing up, and I can't wrap my mind around that mindset. It's what they're meant to do. And they do it so well if we let them. Each stage of of childhood has it's more enjoyable and less enjoyable aspects, but each stage is so neat to watch unfold. His communication, understanding, and curiosity are so fun to watch blossom. But with all of that comes the melt-downs and big emotions of a human trying to let you know what they want, but not understanding why they can't always have it.
So we'll have a little family get together tomorrow. Low-key, a couple presents to unwrap, a cake with Curious George on it. Ice cream. Then we'll have a play date with his best baby buddy Henry (My best friend Kelsey's little boy) on Tuesday. And I'll keep breathing in his smell and kissing his cheeks even though he growls and turns away with a smile. And I will take every moment with him in. Because soon, I'll be going a month without him, and I need all of the playtime and giggles and wonderful memories I can get.
Sunday, February 23, 2014
Moving right along
Lots of good news this week!
I now have health insurance, which means we can start scheduling things with the bone marrow transplant clinic! Things are going to get really real really quick. Which is wonderful because the sooner we can get things going, the sooner all of this terrible stuff will be behind us. The sooner I can get this disease under control and get another chance at remission. The sooner I can get back to living life with my little family.
The other wonderful news is the call I got yesterday from my transplant coordinator. My sister, Laura, is a match to be my bone marrow donor! This means a lower chance of rejection, and a better overall chance of success. Plus, the transplant can happen sooner, as we don't have to look through the donor registry. She is being absolutely fearless in the face of multiple tests, blood draws, needles, long days at the hospital, and Neupogen shots. I'm so very grateful.
I got chemo on Friday, and this one has hit very hard. The nausea isn't controlled at all by the meds, and the fatigue had me passed out by 5:30 last night. But I'll take that to mean that it's working.
Another cheek swab tomorrow to be sent off to KU Med, and then the scheduling for testing will begin.
Let's get this over with.
I now have health insurance, which means we can start scheduling things with the bone marrow transplant clinic! Things are going to get really real really quick. Which is wonderful because the sooner we can get things going, the sooner all of this terrible stuff will be behind us. The sooner I can get this disease under control and get another chance at remission. The sooner I can get back to living life with my little family.
The other wonderful news is the call I got yesterday from my transplant coordinator. My sister, Laura, is a match to be my bone marrow donor! This means a lower chance of rejection, and a better overall chance of success. Plus, the transplant can happen sooner, as we don't have to look through the donor registry. She is being absolutely fearless in the face of multiple tests, blood draws, needles, long days at the hospital, and Neupogen shots. I'm so very grateful.
I got chemo on Friday, and this one has hit very hard. The nausea isn't controlled at all by the meds, and the fatigue had me passed out by 5:30 last night. But I'll take that to mean that it's working.
Another cheek swab tomorrow to be sent off to KU Med, and then the scheduling for testing will begin.
Let's get this over with.
Friday, February 14, 2014
A chemotastic Valentine's Day
That last shot of Neupogen did it's job! (I assumed it had, since the pain got so intense.)
My white blood cell counts were up, so I was finally able to get treatment. I was very glad to be able to get chemo today. I start to get anxious, without realizing it, my hands are on my neck, feeling, absentmindedly. I'm always scared to feel them getting bigger again.
But they're not bigger. And I'm very thankful.
I'm feeling sick. Nausea combined with insatiable hunger. Fatigue paired with the wired feeling that steroids bring. Tomorrow will be worse, Sunday will be better.
I haven't heard back about disability. Or insurance. I'm frustrated and scared and when I start to think about it too much I am overtaken by anger that melts into sadness and fades into a mild panic attack.
Starting next week, I will be making phone calls. Every day. I will be calling. And calling. Until I get answers.
I'm not going down without a fight.
My white blood cell counts were up, so I was finally able to get treatment. I was very glad to be able to get chemo today. I start to get anxious, without realizing it, my hands are on my neck, feeling, absentmindedly. I'm always scared to feel them getting bigger again.
But they're not bigger. And I'm very thankful.
I'm feeling sick. Nausea combined with insatiable hunger. Fatigue paired with the wired feeling that steroids bring. Tomorrow will be worse, Sunday will be better.
I haven't heard back about disability. Or insurance. I'm frustrated and scared and when I start to think about it too much I am overtaken by anger that melts into sadness and fades into a mild panic attack.
Starting next week, I will be making phone calls. Every day. I will be calling. And calling. Until I get answers.
I'm not going down without a fight.
Monday, February 10, 2014
2/10/2014
No treatment last Friday, due to my white blood cell/neutrophil counts being too low. So I got a shot of Neupogen in the stomach and was off to work. I'll be getting treatment on Wednesday, as long as labs are good.
And there was some "good" news. Dr. Hurwitz, after consulting with my KU Med docs and an oncologist in Nebraska, decided that we aren't going to try Doxorubicin again. Ever. The risks outweigh the benefits at this point (it's tough on the heart, and I've already had quite a few doses from the first go-around) and after the reaction I had, it was agreed that we would just drop it. The other two chemo drugs, the Gemzar and Navelbine, seem to be working to shrink the tumors. So, yay! No more of the nasty red stuff!
This also means that we can up the doses of the other two drugs, since we're dropping the third. This will no doubt make me feel even crappier than usual, but I've already cut back my hours at work in preparation. I just can't do 40 hours anymore. I've been trying so hard to tough it out, but at this point, I'm having trouble getting through my shifts, and I feel like I'm becoming a burden to my co-workers. (Though they're super supportive and would never admit it.)
Since I didn't get chemo Friday, this was the first weekend in a while that I felt almost decent. I went out to Target and bought some cheap shirts that I can wear in Kansas City (stretchy neck, so we can pull it down a bit and easily access the tri-fusion catheter.) But I over-did it. Trying on clothes is so exhausting... arms up and over the head, putting shirts on and taking them off, stepping in and out of pants... I definitely spent the rest of the day snuggled on the couch with Jazz, trying not to move too much.
On Sunday, we had family pictures done. They turned out very well. I know it's morbid, but it's nice to have some pictures of all of us, just in case something were to happen to me. And it was nice to get pictures while I still have all this hair! This is one of my favorites:
I'm still waiting to hear back about disability and insurance. I've filled out all of the paperwork, sent in all of the information they might need. I have nightly panic attacks about it all. I try to breathe, to stay calm. Eventually I give in and take a tiny dose of Lorazepam.
I'm so scared that I won't be able to get this transplant in time. I feel a clock ticking.
I feel like I'm running out of time.
I take a deep breath. I repeat to myself:
"You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should."
And there was some "good" news. Dr. Hurwitz, after consulting with my KU Med docs and an oncologist in Nebraska, decided that we aren't going to try Doxorubicin again. Ever. The risks outweigh the benefits at this point (it's tough on the heart, and I've already had quite a few doses from the first go-around) and after the reaction I had, it was agreed that we would just drop it. The other two chemo drugs, the Gemzar and Navelbine, seem to be working to shrink the tumors. So, yay! No more of the nasty red stuff!
This also means that we can up the doses of the other two drugs, since we're dropping the third. This will no doubt make me feel even crappier than usual, but I've already cut back my hours at work in preparation. I just can't do 40 hours anymore. I've been trying so hard to tough it out, but at this point, I'm having trouble getting through my shifts, and I feel like I'm becoming a burden to my co-workers. (Though they're super supportive and would never admit it.)
Since I didn't get chemo Friday, this was the first weekend in a while that I felt almost decent. I went out to Target and bought some cheap shirts that I can wear in Kansas City (stretchy neck, so we can pull it down a bit and easily access the tri-fusion catheter.) But I over-did it. Trying on clothes is so exhausting... arms up and over the head, putting shirts on and taking them off, stepping in and out of pants... I definitely spent the rest of the day snuggled on the couch with Jazz, trying not to move too much.
On Sunday, we had family pictures done. They turned out very well. I know it's morbid, but it's nice to have some pictures of all of us, just in case something were to happen to me. And it was nice to get pictures while I still have all this hair! This is one of my favorites:
I'm still waiting to hear back about disability and insurance. I've filled out all of the paperwork, sent in all of the information they might need. I have nightly panic attacks about it all. I try to breathe, to stay calm. Eventually I give in and take a tiny dose of Lorazepam.
I'm so scared that I won't be able to get this transplant in time. I feel a clock ticking.
I feel like I'm running out of time.
I take a deep breath. I repeat to myself:
"You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should."
Tuesday, February 4, 2014
Little pieces
Today's treatment with the nasty stuff was canceled on account of the weather. Even though I want to get as much chemo in me as often as possible, I was relieved to get the call. This probably means I'm in for an all-day infusapalooza on Friday. But at least I'll have a few days to recover without losing too many hours on my paycheck.
I got off work early today so that I wouldn't get stranded in town, and I've spent the day with my boys. We played outside in the snow for a bit and then had hot cocoa. A wonderful little snow day.
But at the back of my mind, the future looms.
I think about the transplant. About Kansas City. Hope Lodge, the BMT clinic, the tri-fusion catheter surgery. The sickness, the weakness. The closeness to death. The 100 days post-transplant that I'll be away from home, at the hospital every day. I try not to think about it too much because I start to panic. Too much, too soon. How will I do this?
Hell, I'm still trying to get insurance. They can't even start the transplant process until we have that figured out. Thanks, Brownback. No need to expand Medicaid, just let the poor die.
Anyhoo.
To cope, I find myself sectioning it out into little pieces in my mind.
More salvage chemo. Remission. Insurance. Getting Laura tested as a donor (or moving on to the donor registry). Tests. Scans. Bone marrow biopsy. Harvesting stem cells. Trifusion catheter placement. Hundreds of signatures on lines at the end of medical documents explaining all of the ways I could die. Brutal chemo. Stem cells. Neutropenia. Isolation. The long wait until engraftment.
And then 100 days of watching and waiting. At least a month of that away from my son.
100 days. And then I'll be home.
One day at a time. One little piece falling into place at a time. I'll get there. And my boys will be there waiting for me.
But right here, right now, the cancer is at bay. Or at least it isn't getting larger at the moment. And Curious George is playing in the next room. And I have a little boy to cuddle. I hear my doctor's words to me on the day we discovered the latest relapse.
"Be here now. This is your story. No one else's."
I got off work early today so that I wouldn't get stranded in town, and I've spent the day with my boys. We played outside in the snow for a bit and then had hot cocoa. A wonderful little snow day.
But at the back of my mind, the future looms.
I think about the transplant. About Kansas City. Hope Lodge, the BMT clinic, the tri-fusion catheter surgery. The sickness, the weakness. The closeness to death. The 100 days post-transplant that I'll be away from home, at the hospital every day. I try not to think about it too much because I start to panic. Too much, too soon. How will I do this?
Hell, I'm still trying to get insurance. They can't even start the transplant process until we have that figured out. Thanks, Brownback. No need to expand Medicaid, just let the poor die.
Anyhoo.
To cope, I find myself sectioning it out into little pieces in my mind.
More salvage chemo. Remission. Insurance. Getting Laura tested as a donor (or moving on to the donor registry). Tests. Scans. Bone marrow biopsy. Harvesting stem cells. Trifusion catheter placement. Hundreds of signatures on lines at the end of medical documents explaining all of the ways I could die. Brutal chemo. Stem cells. Neutropenia. Isolation. The long wait until engraftment.
And then 100 days of watching and waiting. At least a month of that away from my son.
100 days. And then I'll be home.
One day at a time. One little piece falling into place at a time. I'll get there. And my boys will be there waiting for me.
But right here, right now, the cancer is at bay. Or at least it isn't getting larger at the moment. And Curious George is playing in the next room. And I have a little boy to cuddle. I hear my doctor's words to me on the day we discovered the latest relapse.
"Be here now. This is your story. No one else's."
Sunday, February 2, 2014
2/2/2014
Friday's treatment was quick and happily uneventful.
We just did the Gemzar and Navelbine again. I go in on Tuesday for a 4-hour infusion of the drug I had a reaction to, Doxorubicin, in the hopes that a longer infusion will desensitize me. I'm nervous. The reaction I had was so incredibly scary; the feeling like I was suffocating in my own body. Panicked, helpless. I know that they'll be watching me closely, with an oxygen tank nearby. I will try again. I can do this. I'll do anything to get these tumors gone. I think of Jazz and Brandon and I know that I will and can do anything.
Speaking of which, I can feel those tumors in my neck getting smaller. What a triumphant feeling! I know I shouldn't let myself get too excited, considering the last false hope, but I'm still just happy to see a response. Any response.
I guess my body just likes that good ol' toxic chemo.
As I type, Jazz is slumbering. I'm watching his chest rise and fall on the monitor screen. I'm so thankful to have known him. No matter what happens, I'm so thankful to have had Brandon and Jazz in my life, teaching me all of those lessons I didn't know I needed to know.
I feel very sick, very fatigued, very heavy. But better than yesterday.
Please forgive the jumpy post. Foggy brain.
We just did the Gemzar and Navelbine again. I go in on Tuesday for a 4-hour infusion of the drug I had a reaction to, Doxorubicin, in the hopes that a longer infusion will desensitize me. I'm nervous. The reaction I had was so incredibly scary; the feeling like I was suffocating in my own body. Panicked, helpless. I know that they'll be watching me closely, with an oxygen tank nearby. I will try again. I can do this. I'll do anything to get these tumors gone. I think of Jazz and Brandon and I know that I will and can do anything.
Speaking of which, I can feel those tumors in my neck getting smaller. What a triumphant feeling! I know I shouldn't let myself get too excited, considering the last false hope, but I'm still just happy to see a response. Any response.
I guess my body just likes that good ol' toxic chemo.
As I type, Jazz is slumbering. I'm watching his chest rise and fall on the monitor screen. I'm so thankful to have known him. No matter what happens, I'm so thankful to have had Brandon and Jazz in my life, teaching me all of those lessons I didn't know I needed to know.
I feel very sick, very fatigued, very heavy. But better than yesterday.
Please forgive the jumpy post. Foggy brain.
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