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.
Saturday, October 17, 2015
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.
Tuesday, October 28, 2014
+180 day PET scan and bone marrow biopsy results
I was just expecting to have labs drawn, liver enzyme numbers checked and a quick office visit on Monday. My results appointment for the 6 month scan and biopsy I had done on the 17th was scheduled for Halloween morning. But the results were in, so I got the news early. I think the doctors really like to get to give good news.
My scan was clean.
All of the nodes that were still enlarged or showing activity a few months ago have shrunk and are showing no active disease. My bone marrow biopsy showed no evidence of Lymphoma.
Which means that we have done exactly what we set out to do: we bought more time. I'm okay, right here, right now. And I am so grateful I could burst. To be able to have more days, months, years watching Jazz grow into an incredible human. More time to keep finding more and more to love about my husband.
I am still dealing with Graft vs Host Disease. I had it initially in my upper GI tract, then on my skin, and now in my mouth, lungs and liver. So, I use a steroid rinse for my mouth (it helps make my mouth feel less sand-papery, but I still can't taste much,) take a very high dose steroid and inhaler for my lungs (I was down to 68% lung capacity, and am breathing well now,) and we are keeping an eye on my liver numbers, which are slowly moving down, thanks to those high-dose steroids I mentioned.
So, in short, sinus surgery is no joke, fungal infections are unpleasant, fatigue is a bitch. It's been a lot of medications and nasty side effects and a surprise hospital stay last month, thanks to the GVHD of the lungs and some sort of bug. (The vomiting, the coughing, the blown blood vessels in my eyes...) But I've made it so far. And I'm starting to feel good for the first time in so long.
I will never use the word "cure." I don't talk about "remission." I know that I am living with this disease for the rest of my life. I will always be touching my neck, watching my clavicles, waiting for that lump to pop up again. Waiting for life to be interrupted again, possibly discontinued. But today is not that day. And all I can say is that I am so happy to have more time. I'm okay right now. And now is all we have.
Today, I find my mind cautiously wandering into almost hopeful territory. Dreams, resurfacing. Like dipping my toe into a cold pond, I hesitate, but for the first time in a year, allow myself to think about the unthinkable "someday." Finishing my degree, having a full-time job that pays enough for us to live on, maybe that little farmhouse on 3 acres, maybe a little sister or brother for Jazz. God, hope is such a hard thing to have, after it all. But nothing can squash it completely. It's just an ember right now, but it still burns. Hope. That thing that simultaneously carries us on and destroys us slowly.
On Friday, I will find out my chimarism. (The percentage of Laura's cells that have taken over my bone marrow and replaced my immune system.) We are hoping to see it at 100% or very close to it. So, fingers crossed.
Now, back to living.
My scan was clean.
All of the nodes that were still enlarged or showing activity a few months ago have shrunk and are showing no active disease. My bone marrow biopsy showed no evidence of Lymphoma.
Which means that we have done exactly what we set out to do: we bought more time. I'm okay, right here, right now. And I am so grateful I could burst. To be able to have more days, months, years watching Jazz grow into an incredible human. More time to keep finding more and more to love about my husband.
I am still dealing with Graft vs Host Disease. I had it initially in my upper GI tract, then on my skin, and now in my mouth, lungs and liver. So, I use a steroid rinse for my mouth (it helps make my mouth feel less sand-papery, but I still can't taste much,) take a very high dose steroid and inhaler for my lungs (I was down to 68% lung capacity, and am breathing well now,) and we are keeping an eye on my liver numbers, which are slowly moving down, thanks to those high-dose steroids I mentioned.
So, in short, sinus surgery is no joke, fungal infections are unpleasant, fatigue is a bitch. It's been a lot of medications and nasty side effects and a surprise hospital stay last month, thanks to the GVHD of the lungs and some sort of bug. (The vomiting, the coughing, the blown blood vessels in my eyes...) But I've made it so far. And I'm starting to feel good for the first time in so long.
I will never use the word "cure." I don't talk about "remission." I know that I am living with this disease for the rest of my life. I will always be touching my neck, watching my clavicles, waiting for that lump to pop up again. Waiting for life to be interrupted again, possibly discontinued. But today is not that day. And all I can say is that I am so happy to have more time. I'm okay right now. And now is all we have.
Today, I find my mind cautiously wandering into almost hopeful territory. Dreams, resurfacing. Like dipping my toe into a cold pond, I hesitate, but for the first time in a year, allow myself to think about the unthinkable "someday." Finishing my degree, having a full-time job that pays enough for us to live on, maybe that little farmhouse on 3 acres, maybe a little sister or brother for Jazz. God, hope is such a hard thing to have, after it all. But nothing can squash it completely. It's just an ember right now, but it still burns. Hope. That thing that simultaneously carries us on and destroys us slowly.
On Friday, I will find out my chimarism. (The percentage of Laura's cells that have taken over my bone marrow and replaced my immune system.) We are hoping to see it at 100% or very close to it. So, fingers crossed.
Now, back to living.
Sunday, July 27, 2014
My mantra for this week
"Worrying does not take away tomorrow's troubles, it takes away today's peace."
*breathe.
"Worrying does not take away tomorrow's troubles, it takes away today's peace."
*breathe.
"Worrying does not take away tomorrow's troubles, it takes away today's peace."
*breathe.
Saturday, July 19, 2014
Day +100!
Yay! I made it! Still alive, baby!
This will be a short one, as Jazz is currently running around like a mad man. Seriously, though. He's shuffling around in my shoes with a bucket on his head. He just now laid down on the floor and blissfully poured a bag of mega blocks on his face.
The ENT recommended endoscopic surgery on the sphenoid sinus in a few weeks. So that sucks. If the PET/CT scan this Thursday shows improvement thanks to the voriconizole, they might cancel it and just have me continue the meds. Both options are pretty uncomfortable, (meds give me diarrhea, light sensitivity, nausea, fatigue, and random aural/visual hallucinations, but they have pretty much stopped the headaches. Surgery is... well, knock-you-out-and-drill-in-your-sinuses stuff) but I'm open to whatever.
Anyhoo, I had my bone marrow biopsy done on wednesday, and am still very sore. The pain has never lasted this long. Hopefully it will go away soon. They will test it for cancerous cells and check what percentage of my bone marrow has switched to Laura's. Hoping for 100%!
Speaking of things that have gone away, I've stopped having a period again. Hot flashes all the dang time. The last ovarian failure didn't last too long, though, so I'm hopeful.
Struggling with insurance, the usual. I'm getting better and better and being straight forward on the phone. Or bitchy. Whatever gets it done.
God, he's dragging around a bike pump and shrieking gleefully. I'd better go.
Results on all the tests on July 31st!
This will be a short one, as Jazz is currently running around like a mad man. Seriously, though. He's shuffling around in my shoes with a bucket on his head. He just now laid down on the floor and blissfully poured a bag of mega blocks on his face.
The ENT recommended endoscopic surgery on the sphenoid sinus in a few weeks. So that sucks. If the PET/CT scan this Thursday shows improvement thanks to the voriconizole, they might cancel it and just have me continue the meds. Both options are pretty uncomfortable, (meds give me diarrhea, light sensitivity, nausea, fatigue, and random aural/visual hallucinations, but they have pretty much stopped the headaches. Surgery is... well, knock-you-out-and-drill-in-your-sinuses stuff) but I'm open to whatever.
Anyhoo, I had my bone marrow biopsy done on wednesday, and am still very sore. The pain has never lasted this long. Hopefully it will go away soon. They will test it for cancerous cells and check what percentage of my bone marrow has switched to Laura's. Hoping for 100%!
Speaking of things that have gone away, I've stopped having a period again. Hot flashes all the dang time. The last ovarian failure didn't last too long, though, so I'm hopeful.
Struggling with insurance, the usual. I'm getting better and better and being straight forward on the phone. Or bitchy. Whatever gets it done.
God, he's dragging around a bike pump and shrieking gleefully. I'd better go.
Results on all the tests on July 31st!
Sunday, July 6, 2014
Day +87
I'm still alive! Though the road here has been filled with bumps and potholes and detours.
On day +30, we measured the percentage of my immune system that had been taken over by Laura's immune system. It was 95%! At day +60, the number had risen to 97%. So far, so good. Looking to hit 100% by day +100 or so.
I developed some Graft vs Host Disease of the upper GI tract. I was started on a corticosteroid suspended in corn oil 4x a day and a capsule form corticosteroid 2x a day for a month or so. Other than not being able to sleep well or taste anything, the side effects were minimal. No "roid rage" or constant hunger. Although it was certainly easier to eat because I wasn't constantly nauseated.
I've started going to the BMT clinic for labs and a doctor's visit just twice a week now. I was getting IV magnesium for a couple of weeks, which was terrible. Apparently I'm a delicate little flower now, overly sensitive to both Magnesium and my anti-rejection med, Tacrolimus. It makes things a bit tougher.
On day +75, I was taken off of the anti-fungal med, Diflucan. In the following week, the headache I'd been having once and a while for the last month began to be a painful daily occurrence. The doc ordered a CT scan of my head (insert "getting my head checked" jokes here) and the results gave him considerable concern that I have a fungal infection in my sinuses. Freaky, I know. So they prescribed me a serious heavy-duty anti-fungal called Voriconizole to combat the potential infection. More side effects. Tremors, loss of appetite, bone/joint/muscle pain, memory lapses, foggy head, and increased fatigue and weakness. But no more headache!
Anyhoo, it's been a particularly tough week.
I have an appointment with the ear, nose, and throat specialist on Thursday. Hopefully it will be informative and not any more bad news. Maybe they'll just be like, "Oh, hey, you're already on Voriconazole? Sweet. Just keep that up and no problem-o!" or maybe they'll run tests or take a biopsy. ugh. That all has certainly been a bit stressful.
I wish I had the stamina and strength to run around with my son, but he is getting used to bringing me books and wooden puzzles on the couch. We snuggle and watch movies and I try to remind myself that it won't always be this way. I have a short fuse when the pain and discomfort have gone on for too long. But he and Brandon are as understanding and forgiving as two humans can be.
I'll write more, again, soon. But right now there is a dude that just woke up from a nap, and he needs someone to color with.
On day +30, we measured the percentage of my immune system that had been taken over by Laura's immune system. It was 95%! At day +60, the number had risen to 97%. So far, so good. Looking to hit 100% by day +100 or so.
I developed some Graft vs Host Disease of the upper GI tract. I was started on a corticosteroid suspended in corn oil 4x a day and a capsule form corticosteroid 2x a day for a month or so. Other than not being able to sleep well or taste anything, the side effects were minimal. No "roid rage" or constant hunger. Although it was certainly easier to eat because I wasn't constantly nauseated.
I've started going to the BMT clinic for labs and a doctor's visit just twice a week now. I was getting IV magnesium for a couple of weeks, which was terrible. Apparently I'm a delicate little flower now, overly sensitive to both Magnesium and my anti-rejection med, Tacrolimus. It makes things a bit tougher.
On day +75, I was taken off of the anti-fungal med, Diflucan. In the following week, the headache I'd been having once and a while for the last month began to be a painful daily occurrence. The doc ordered a CT scan of my head (insert "getting my head checked" jokes here) and the results gave him considerable concern that I have a fungal infection in my sinuses. Freaky, I know. So they prescribed me a serious heavy-duty anti-fungal called Voriconizole to combat the potential infection. More side effects. Tremors, loss of appetite, bone/joint/muscle pain, memory lapses, foggy head, and increased fatigue and weakness. But no more headache!
Anyhoo, it's been a particularly tough week.
I have an appointment with the ear, nose, and throat specialist on Thursday. Hopefully it will be informative and not any more bad news. Maybe they'll just be like, "Oh, hey, you're already on Voriconazole? Sweet. Just keep that up and no problem-o!" or maybe they'll run tests or take a biopsy. ugh. That all has certainly been a bit stressful.
I wish I had the stamina and strength to run around with my son, but he is getting used to bringing me books and wooden puzzles on the couch. We snuggle and watch movies and I try to remind myself that it won't always be this way. I have a short fuse when the pain and discomfort have gone on for too long. But he and Brandon are as understanding and forgiving as two humans can be.
I'll write more, again, soon. But right now there is a dude that just woke up from a nap, and he needs someone to color with.
Subscribe to:
Posts (Atom)