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.
Sunday, February 23, 2014
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.
Tuesday, January 28, 2014
Relapse, Take 2.
It's back.
I felt the familiar little nodes popping out of my neck back in the first week of November. I was sitting on the couch with my whole world there next to me. My boys. I went to the bathroom to cry as silently as I could. I knew. This ain't my first rodeo.
Then came the CT scan, biopsy, another port placement.
More treatment.
This time, we tried a very new drug called Brentuximab. It just came out of clinical trials not more than two years ago, and is genetically engineered to send your own antibodies (combined with targeted chemotherapy) directly to the Reed-Sternburg cell, which is the big bad malignant cell that makes up Hodgkin's Lymphoma. And for the last two months, it worked. The tumors in my neck shrank.
And then two weeks ago I felt new, hard, painful nodes in my neck. It had stopped working.
I mean, crap, you know?
So the last two weeks have been hard. Progressively, it got more and more difficult to breathe, to stay awake past noon, to go to work and stay standing. I've felt powerless, in pain, being consumed by tumors again.
And that brings us to the most recent developments. I had a new treatment on Friday, a salvage chemo called GVD. It's a three chemo cocktail that consists of Gemcitabine, Vinorelbine, and Doxorubicin. I was infused with The G and the V with no problem; however, about four minutes into my infusion of Doxorubicin, I had a reaction. I had leaned forward to take a picture of the IV bag, (pink chemo, couldn't pass it up) and when I sat back, a terrible warmth filled my belly, spreading up to my chest. I couldn't breathe. Thank goodness my mother was sitting with me- she ran and got the nurses, who immediately stopped the drip, put me on oxygen and filled me with Benedryl. I heard myself gasping out "help me" over and over. And then, finally, I could breathe again.
It was absolutely terrifying. But two out of three ain't bad, I say.
Anyhoo, we'll be trying again next week. Gulp. I'll be loading up on pre-meds, and hopefully that will nip any bad reaction in the bud.
And the good news? I'm feeling so much better. On Sunday, I walked outside and took a deep breath. I could breathe. I still feel like I'm going through chemo... you know... incredibly crappy. The weekends are especially bad. But compared to last week? Much better. You know it's bad when you feel "good" on chemo!
So I'm feeling hopeful. I get treatment every week until I'm back in remission, I guess. Then comes an Allogenic Stem Cell Transplant.
But we're not there yet.
I felt the familiar little nodes popping out of my neck back in the first week of November. I was sitting on the couch with my whole world there next to me. My boys. I went to the bathroom to cry as silently as I could. I knew. This ain't my first rodeo.
Then came the CT scan, biopsy, another port placement.
More treatment.
This time, we tried a very new drug called Brentuximab. It just came out of clinical trials not more than two years ago, and is genetically engineered to send your own antibodies (combined with targeted chemotherapy) directly to the Reed-Sternburg cell, which is the big bad malignant cell that makes up Hodgkin's Lymphoma. And for the last two months, it worked. The tumors in my neck shrank.
And then two weeks ago I felt new, hard, painful nodes in my neck. It had stopped working.
I mean, crap, you know?
So the last two weeks have been hard. Progressively, it got more and more difficult to breathe, to stay awake past noon, to go to work and stay standing. I've felt powerless, in pain, being consumed by tumors again.
And that brings us to the most recent developments. I had a new treatment on Friday, a salvage chemo called GVD. It's a three chemo cocktail that consists of Gemcitabine, Vinorelbine, and Doxorubicin. I was infused with The G and the V with no problem; however, about four minutes into my infusion of Doxorubicin, I had a reaction. I had leaned forward to take a picture of the IV bag, (pink chemo, couldn't pass it up) and when I sat back, a terrible warmth filled my belly, spreading up to my chest. I couldn't breathe. Thank goodness my mother was sitting with me- she ran and got the nurses, who immediately stopped the drip, put me on oxygen and filled me with Benedryl. I heard myself gasping out "help me" over and over. And then, finally, I could breathe again.
It was absolutely terrifying. But two out of three ain't bad, I say.
Anyhoo, we'll be trying again next week. Gulp. I'll be loading up on pre-meds, and hopefully that will nip any bad reaction in the bud.
And the good news? I'm feeling so much better. On Sunday, I walked outside and took a deep breath. I could breathe. I still feel like I'm going through chemo... you know... incredibly crappy. The weekends are especially bad. But compared to last week? Much better. You know it's bad when you feel "good" on chemo!
So I'm feeling hopeful. I get treatment every week until I'm back in remission, I guess. Then comes an Allogenic Stem Cell Transplant.
But we're not there yet.
Tuesday, March 12, 2013
Being the change
My mother taught me to be consciously subversive instead of mindlessly indignant. To participate in a corrupt system in the hopes of either changing it or bringing it down, rather than simply giving up and walking away. Come to think of it, this idea is rather reminiscent of what she told me when I was a child regarding the purpose of the Bodhisattva: to willfully participate in the sorrows of the world, for the benefit of the unenlightened.
But there are broken systems, corrupt, horribly dysfunctional, poisonous systems which I know that I myself am not rich or influential enough to change or bring down within my lifetime; our healthcare system (with "non-profit" hospitals making millions of dollars off of the desperate and ailing masses to fill billionaire CEO's pockets), our political system (run by shady lobbyists for the benefit of whoever has the most money to get their interests to be priority), and our education system (which teaches our children how to listen to the experts with quiet reverence, how to regurgitate "facts", how to disconnect at the ring of a bell, how to be good little consumers and service industry workers, how to follow the rules without question.) And that's just to name the big three.
But I've come to realize that I've found my own way to be truly subversive. What could be more damaging to the status quo than self sufficiency and valuing things that are not things? I am a stay at home mother who raises chicken and livestock for food, with plans of gardening and preserving her own fruits and vegetables come summer. This is the way I've found that I can make my positive difference, here and now, with what little I have: fighting consumerism, reinforcing the importance of self-reliance and responsibiltiy, and most importantly, raising my son, our future, to love life, nature, and family over the endless pursuit of wealth and possessions.
I know there are other small things one can to to change the world. Things that don't cost a cent. Speak up, in any way you can, against injustice. Smile at everyone you see. Be empathetic, always. Take time to be still and introspective, questioning your motives and goals.
But most importantly, to quote Kurt Vonnegut: "Damn it, you've got to be kind."
But there are broken systems, corrupt, horribly dysfunctional, poisonous systems which I know that I myself am not rich or influential enough to change or bring down within my lifetime; our healthcare system (with "non-profit" hospitals making millions of dollars off of the desperate and ailing masses to fill billionaire CEO's pockets), our political system (run by shady lobbyists for the benefit of whoever has the most money to get their interests to be priority), and our education system (which teaches our children how to listen to the experts with quiet reverence, how to regurgitate "facts", how to disconnect at the ring of a bell, how to be good little consumers and service industry workers, how to follow the rules without question.) And that's just to name the big three.
But I've come to realize that I've found my own way to be truly subversive. What could be more damaging to the status quo than self sufficiency and valuing things that are not things? I am a stay at home mother who raises chicken and livestock for food, with plans of gardening and preserving her own fruits and vegetables come summer. This is the way I've found that I can make my positive difference, here and now, with what little I have: fighting consumerism, reinforcing the importance of self-reliance and responsibiltiy, and most importantly, raising my son, our future, to love life, nature, and family over the endless pursuit of wealth and possessions.
I know there are other small things one can to to change the world. Things that don't cost a cent. Speak up, in any way you can, against injustice. Smile at everyone you see. Be empathetic, always. Take time to be still and introspective, questioning your motives and goals.
But most importantly, to quote Kurt Vonnegut: "Damn it, you've got to be kind."
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