of all previous metabolic activity. No new metabolically active lymph nodes identified.
Remission is how my doctor put it.
The best news I never expected.
Saturday, January 9, 2016
Thursday, January 7, 2016
Scan Day
Today is scan day: the day that comes every three months when I find out how much my cancer has grown or not grown.
I know its always there. My silent partner. Til death do us part. I just hope it isn't spreading too much. Or at all. Halted, perhaps.
I think my expectations have become healthily realistic.
Here goes.
I know its always there. My silent partner. Til death do us part. I just hope it isn't spreading too much. Or at all. Halted, perhaps.
I think my expectations have become healthily realistic.
Here goes.
Saturday, January 2, 2016
1/2/16
I've been spending my time working on my marriage and focusing on my little family. You would think that Brandon and I never had a chance; falling in love while I got a transplant, getting pregnant two months after, pregnancy, marriage, childbirth, a newborn, a toddler, a relapse/remission, relapse/remission/relapse... Still no time to work on us. To figure out how we fit together. But there was always love. So we made it. We are making it. We're working as hard as ever. I'm focusing on my husband, who has seen my every worst moment, my darkest places, and loved me anyway. I'm focusing on my son, because he has seen me shake in pain and cry in self-pity and he always wipes away my tears. Too young for any of this, but always there to put me back together when I fall apart. I don't hide things from him. Because I don't want him to hide his feelings. I think of what I want to leave him with, when I go. Healthy attitudes about expressing emotions, holding courage, kindness and love above all, knowing how he feels is valid- to examine it and let it pass. To allow himself to feel anger and sadness and then to breathe them out when it's time.
When you begin to see that you won't get the long life you expected, you realize that your time is more precious than anything in the world. I know it's cliche, and the English major still deep within me winces, but it's true. Every hour that ticks away at work or at a doctor's appointment is time taken from more important things. The most important things.
So I'm focusing. I'm focusing so closely that all I see are my husband and child. All I see are clocks ticking. All I see is the love that I have to give in the time I am given to give it.
When you begin to see that you won't get the long life you expected, you realize that your time is more precious than anything in the world. I know it's cliche, and the English major still deep within me winces, but it's true. Every hour that ticks away at work or at a doctor's appointment is time taken from more important things. The most important things.
So I'm focusing. I'm focusing so closely that all I see are my husband and child. All I see are clocks ticking. All I see is the love that I have to give in the time I am given to give it.
Tuesday, December 8, 2015
Time flies when you're sick for months on end
Hi, internet.
So, let's see, where did we leave off? Mid October? Shortly after my last post I was diagnosed with parainfluenza. A few weeks of green phlegm, terrible coughing, and a couple days of voice loss and things seemed to get better for almost a week. Then I woke up hacking up green again, and slowly slid into fevers, chills and fatigue.
I was still sick when my husband, with the help of a friend and our families, moved us into a new home in town, closer to work, closer to friends/family, closer to hospitals. I was feverish and barely able to stand. My husband continued, over the next few days, to single handedly move the rest of our boxes and unpack necessities. While taking care of our son and me. Last Thursday, the usual coughing and fatigue changed into something new: chest pain, shortness of breath, dizzy, barely able to stand or walk. I called into work and went to the BMT clinic the next morning, where I was diagnosed with pneumonia.
I know, the fun just doesn't stop with me right!? Ha! Anyhoo.
Brandon put me to bed, tucking new towels under me to catch the sweat and took care of our son so I could stay bedridden for days. He hugged me, kissed me, told me it would get better. Thanked me for being strong.
My mother hooked her arm in mine to help me weakly walk from waiting room to exam room, from exam room to CT scan. She drove me to and from the appointment, and waited with me for 6 hours in stiff chairs for answers and medications.
But I am happy to report that the antibiotics really seem to be doing the trick! I feel better every day. I am still fatigued and weak, but its hard to tell how much of that is the chemo.
Oh, the "new" chemo! Long story short, its two different pills, taken together. Pretty nice not to have to get infusions or lose all my hair, though the nausea and fatigue is pretty brutal. I'm down to the lowest weight of my adult life: a much-too-thin 118 lbs. But I'm eating as much as I can and drinking Ensure when I can't, so hopefully that number will go up soon.
So this is my life for now. Things have been so difficult, but I'm seeing a light at the top of the hole again. The hole doesn't seem so deep, now.
Oh, and I took three classes this semester. I had to get an extension on one of my term papers, but it looks like all As and Bs otherwise.
Sometimes I fear that so much sickness is growing a cynic within me. That it's making me harden. I try to remember:
"Be soft. Do not let the world make you hard. Do not let pain make you hate. Do not let the bitterness steal your sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place."
Love keeps me afloat.
So, let's see, where did we leave off? Mid October? Shortly after my last post I was diagnosed with parainfluenza. A few weeks of green phlegm, terrible coughing, and a couple days of voice loss and things seemed to get better for almost a week. Then I woke up hacking up green again, and slowly slid into fevers, chills and fatigue.
I was still sick when my husband, with the help of a friend and our families, moved us into a new home in town, closer to work, closer to friends/family, closer to hospitals. I was feverish and barely able to stand. My husband continued, over the next few days, to single handedly move the rest of our boxes and unpack necessities. While taking care of our son and me. Last Thursday, the usual coughing and fatigue changed into something new: chest pain, shortness of breath, dizzy, barely able to stand or walk. I called into work and went to the BMT clinic the next morning, where I was diagnosed with pneumonia.
I know, the fun just doesn't stop with me right!? Ha! Anyhoo.
Brandon put me to bed, tucking new towels under me to catch the sweat and took care of our son so I could stay bedridden for days. He hugged me, kissed me, told me it would get better. Thanked me for being strong.
My mother hooked her arm in mine to help me weakly walk from waiting room to exam room, from exam room to CT scan. She drove me to and from the appointment, and waited with me for 6 hours in stiff chairs for answers and medications.
But I am happy to report that the antibiotics really seem to be doing the trick! I feel better every day. I am still fatigued and weak, but its hard to tell how much of that is the chemo.
Oh, the "new" chemo! Long story short, its two different pills, taken together. Pretty nice not to have to get infusions or lose all my hair, though the nausea and fatigue is pretty brutal. I'm down to the lowest weight of my adult life: a much-too-thin 118 lbs. But I'm eating as much as I can and drinking Ensure when I can't, so hopefully that number will go up soon.
So this is my life for now. Things have been so difficult, but I'm seeing a light at the top of the hole again. The hole doesn't seem so deep, now.
Oh, and I took three classes this semester. I had to get an extension on one of my term papers, but it looks like all As and Bs otherwise.
Sometimes I fear that so much sickness is growing a cynic within me. That it's making me harden. I try to remember:
"Be soft. Do not let the world make you hard. Do not let pain make you hate. Do not let the bitterness steal your sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place."
Love keeps me afloat.
Saturday, October 17, 2015
A short one
I'm having a hard day. What my friend and I have come to call a "bad anxiety day." When there is a whirlpool of suffocating thoughts in your head that spin round and round, showing themselves again and again but never disappearing.
So, let's see. I relapsed in May. I underwent one treatment of Brentuximab (immunotherapy), tried for a second one, had a near-anaphalactic allergic reaction, tried again with premeds, got a second dose of Brent in, had a great response (all that pain was a good sign!) and a "normal" PET scan, tried for a third treatment, had near-anaphalactic reaction despite premeds, the pharmacist and doctor decided I was building up a sensitivity to the med, and decided to call it good. A little less than three months later, I had a night two weeks ago where I couldn't breathe. A Saturday spent at KU Med, blood work, CT scan, virus panel, nothing taken away from the whole damn thing but a shrug, a guess of asthma, and what looked like a slightly enlarged lymph node in my neck. Fast forward 2 days, PET scan. It showed some progression of disease in my neck and left arm pit. I already knew, so it isn't a big surprise. I know my body now, I know the signs, I know before they do these days. I've been on this road for so long. The big surprise is that it isn't a large amount of activity. It hasn't spread very far yet.
So now I wait. I wait until Friday, I wait for 6 more days. 6 days that stretch on in anxiety and circling thoughts. I wait to plan my life around treatment. Can I work? Maybe. It depends on if we try Brentuximab one more time. If we go down that road, it will be inpatient an KU Med, involving a huge dose of Benadryl (which makes me slide drunkenly in and out of consciousness) and constant monitoring to make sure I can breathe. Or we go back to good ol' fashioned chemo. Gemzar. Bald, sick, so so tired. Either way, I have PTSD at this point when it comes to getting treatment. My mind and body get tense and expect suffocation again.
This is only snippits. Bits and pieces. I'm sorry. But that's all I can do today.
Sometimes, it's all just too much.
So, let's see. I relapsed in May. I underwent one treatment of Brentuximab (immunotherapy), tried for a second one, had a near-anaphalactic allergic reaction, tried again with premeds, got a second dose of Brent in, had a great response (all that pain was a good sign!) and a "normal" PET scan, tried for a third treatment, had near-anaphalactic reaction despite premeds, the pharmacist and doctor decided I was building up a sensitivity to the med, and decided to call it good. A little less than three months later, I had a night two weeks ago where I couldn't breathe. A Saturday spent at KU Med, blood work, CT scan, virus panel, nothing taken away from the whole damn thing but a shrug, a guess of asthma, and what looked like a slightly enlarged lymph node in my neck. Fast forward 2 days, PET scan. It showed some progression of disease in my neck and left arm pit. I already knew, so it isn't a big surprise. I know my body now, I know the signs, I know before they do these days. I've been on this road for so long. The big surprise is that it isn't a large amount of activity. It hasn't spread very far yet.
So now I wait. I wait until Friday, I wait for 6 more days. 6 days that stretch on in anxiety and circling thoughts. I wait to plan my life around treatment. Can I work? Maybe. It depends on if we try Brentuximab one more time. If we go down that road, it will be inpatient an KU Med, involving a huge dose of Benadryl (which makes me slide drunkenly in and out of consciousness) and constant monitoring to make sure I can breathe. Or we go back to good ol' fashioned chemo. Gemzar. Bald, sick, so so tired. Either way, I have PTSD at this point when it comes to getting treatment. My mind and body get tense and expect suffocation again.
This is only snippits. Bits and pieces. I'm sorry. But that's all I can do today.
Sometimes, it's all just too much.
Friday, May 29, 2015
Truth
Here's what I did wrong.
When this all started (I don't use the word "journey" anymore; rookie mistake. That word has connotations too beautiful for this terrible disease) I only showed the sides of myself that I thought people should see. People only saw the me that was strong, clear-headed, and optimistic.
But I'm an old woman now. (ha! and proud of it!) And I won't bullshit you any more. It's not fair to anyone reading this that needs to know the truth of this process, who may be going through it, too. I AM an optimist. I CAN be strong. But I have good days and bad days. And days that swing from one to the other hourly.
Some days I cry. I feel debilitating pain. I hobble, I limp. I feel sorry for myself. I mourn the loss of a normal life. I have days when I feel as if I am walking through molasses, days where the fatigue is so bad I struggle to lift my body from the couch. I sit, staring at nothing, tears welling in my eyes, wondering what kind of God would let me feel such love for a child, bring it into this world, want nothing but to watch him grow, and know that will be taken from me. The wrenching in my gut, wondering how I will ever say good bye. I have days where I feel useless and scarred and ugly.
Some days, I feel a breeze on my face and smile. I walk into my appointments laughing and ready for war. I thank my lucky stars to have gotten to live at all, to have slept among the redwoods, to have explored Cambridge, England, to have seen Mickey Hart drum into my soul in the flat nowhere in Idaho. I feel my heart fill and run over with love as my son laughs with squinty eyes and hugs my legs. I smile. I look around me at my amazing and supportive friends and family and feel that I have had an incredible life, and that I have a lot of life left to live. I feel grateful. I feel content.
Here is the important thing I've learned to do with all of this.
I allow myself to feel it all.
I allow myself feel every fabulous high and every dark low and I remind myself that everything I feel and think is valid. That I am grieving a loss. But also that it is unproductive to label an emotion as good or bad. They just are. And once I feel everything I need to feel, I go to sleep knowing that when I wake up, it will be a new day to try again, and I don't hold anything against myself. Every day I do my best, and every day, my best is going to be different.
And then I put one foot in front of the other. I fold another load of laundry, I play Mr. Potato Head with my son, and take it one day at a time.
So this is living with cancer. I promise you honesty.
When this all started (I don't use the word "journey" anymore; rookie mistake. That word has connotations too beautiful for this terrible disease) I only showed the sides of myself that I thought people should see. People only saw the me that was strong, clear-headed, and optimistic.
But I'm an old woman now. (ha! and proud of it!) And I won't bullshit you any more. It's not fair to anyone reading this that needs to know the truth of this process, who may be going through it, too. I AM an optimist. I CAN be strong. But I have good days and bad days. And days that swing from one to the other hourly.
Some days I cry. I feel debilitating pain. I hobble, I limp. I feel sorry for myself. I mourn the loss of a normal life. I have days when I feel as if I am walking through molasses, days where the fatigue is so bad I struggle to lift my body from the couch. I sit, staring at nothing, tears welling in my eyes, wondering what kind of God would let me feel such love for a child, bring it into this world, want nothing but to watch him grow, and know that will be taken from me. The wrenching in my gut, wondering how I will ever say good bye. I have days where I feel useless and scarred and ugly.
Some days, I feel a breeze on my face and smile. I walk into my appointments laughing and ready for war. I thank my lucky stars to have gotten to live at all, to have slept among the redwoods, to have explored Cambridge, England, to have seen Mickey Hart drum into my soul in the flat nowhere in Idaho. I feel my heart fill and run over with love as my son laughs with squinty eyes and hugs my legs. I smile. I look around me at my amazing and supportive friends and family and feel that I have had an incredible life, and that I have a lot of life left to live. I feel grateful. I feel content.
Here is the important thing I've learned to do with all of this.
I allow myself to feel it all.
I allow myself feel every fabulous high and every dark low and I remind myself that everything I feel and think is valid. That I am grieving a loss. But also that it is unproductive to label an emotion as good or bad. They just are. And once I feel everything I need to feel, I go to sleep knowing that when I wake up, it will be a new day to try again, and I don't hold anything against myself. Every day I do my best, and every day, my best is going to be different.
And then I put one foot in front of the other. I fold another load of laundry, I play Mr. Potato Head with my son, and take it one day at a time.
So this is living with cancer. I promise you honesty.
Saturday, May 16, 2015
1 year post-transplant scan
...let's get down to the nitty gritty, shall we?
My one-year scan seemed to show progression of disease, and relapse was confirmed yesterday by a lymph node biopsy.
So, boom, there it is. I never saw the transplant as a cure, but I certainly had hoped that I could have gotten a bit (all right, a lot) more time before another relapse rolled around. The disease is pretty widespread, but the tumors are small, especially compared to previous relapses. My bloodwork is normal and I haven't exhibited any signs of relapse. I like to think that the disease isn't very advanced because my new immune system is still trying it's damnedest to keep these tumors in check, but just couldn't handle it completely. Big job, little white blood cells, big job. You put up a damn good fight.
I have a couple of options. Option A is Brentuximab (an immunotherapy, not as brutal as regular ol' chemo) again, which I start on Thursday. We are trying a second round of this one in the hopes that my new "more awesome but not quite awesome enough" immune system will respond more favorably this time. Then the next step(s) depend on if we get these pesky tumors under control with this therapy or not. I'm honestly just ready to do something, anything to keep fighting this. I will make whatever hard decisions I need to make later. Right now, I'm trying to keep myself together. When a piece of me falls off, Jazz glues it back on with a kiss. He is both the reason I cry and the thing that soothes my soul. He picks me flowers, puts them behind my ears, strokes my cheek, and he tells me it will be okay.
In a way, I believe him.
My one-year scan seemed to show progression of disease, and relapse was confirmed yesterday by a lymph node biopsy.
So, boom, there it is. I never saw the transplant as a cure, but I certainly had hoped that I could have gotten a bit (all right, a lot) more time before another relapse rolled around. The disease is pretty widespread, but the tumors are small, especially compared to previous relapses. My bloodwork is normal and I haven't exhibited any signs of relapse. I like to think that the disease isn't very advanced because my new immune system is still trying it's damnedest to keep these tumors in check, but just couldn't handle it completely. Big job, little white blood cells, big job. You put up a damn good fight.
I have a couple of options. Option A is Brentuximab (an immunotherapy, not as brutal as regular ol' chemo) again, which I start on Thursday. We are trying a second round of this one in the hopes that my new "more awesome but not quite awesome enough" immune system will respond more favorably this time. Then the next step(s) depend on if we get these pesky tumors under control with this therapy or not. I'm honestly just ready to do something, anything to keep fighting this. I will make whatever hard decisions I need to make later. Right now, I'm trying to keep myself together. When a piece of me falls off, Jazz glues it back on with a kiss. He is both the reason I cry and the thing that soothes my soul. He picks me flowers, puts them behind my ears, strokes my cheek, and he tells me it will be okay.
In a way, I believe him.
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