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.
Tuesday, October 28, 2014
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.
Wednesday, May 7, 2014
Day +24
Oh, hello, folks. I'm alive and well.
It's been a long few weeks. The wifi in the hospital was spotty, and I ended up not being able to access my blog for the rest of my time there. I was released on Monday, Day +18.
3 weeks, 4 days inpatient.
This has been the hardest thing I've ever done. The first week or so was the worst. The last week or so, I felt like there was a light at the end of the tunnel. In between is a blur of 4-hour vitals, daily labs, beeping infusion pumps, walking laps around the unit, measured urine, hospital meals, countless cups of ice water, and the taste of saline in my nose and throat. My counts dropped very late in the game (Day +14) so they finally gave me a shot of neupogen, that, while insanely painful, worked very well. It continued to work for three days. Once my White Blood Cell (WBC) count was high enough, I was discharged.
It felt like Brandon hugged me for an hour outside the hospital door. When I got in the car, Jazz pretended to be asleep, but once we got to the hotel, he had plenty to say. The first thing he did we show me his new ninja turtle shoes, and told me the character's names. Too cool. I cried, holding Jazz that evening, smelling his hair. I felt like I could finally sleep, now that I was back next to my husband, no midnight vitals and 4 am labs, no tubes connecting me to an IV pole.
Now, don't get me wrong. Physically, this was not as bad as my last transplant. It was a "reduced intensity chemo" because it didn't need to devastate my bone marrow this time. Also, being inpatient meant that I had food, medication, and life-saving help at the press of a button.
The biggest part was mental. Being isolated. Being away from my friends, being away the family that makes me whole. You can tell yourself a million times that your going away for a month to buy yourself years or even decades. (I did.) But once you're there.... once I was there... The sadness and longing is indescribable.
So. Tomorrow, we will be drawing some extra blood, checking to see how well Laura's cells are taking over my immune system. We will have results in 7-10 days. Until then, I go to the outpatient BMT clinic every other day for labs and transfusions. I always get two bags of magnesium when I go in, and it turns out I'm very sensitive to it. They have to run it for three hours instead of the regular two, and I still feel terrible for the rest of the day.
But there is still so much to be thankful for. I keep reminding myself of that. I don't feel tumors climbing up my throat. I can breathe. I am getting stronger every week.
Living in a tiny hotel room with two other people, one being a particularly sensitive and defiant toddler, in a busy and expensive city, away from the place we made home, is very very hard. It's so wonderful to be together again, but it's still so hard. But I'm so thankful to feel the wind again, to be with my family, to walk without lugging around an IV pole. It's hard. But I'm thankful.
60 some days to go.
It's been a long few weeks. The wifi in the hospital was spotty, and I ended up not being able to access my blog for the rest of my time there. I was released on Monday, Day +18.
3 weeks, 4 days inpatient.
This has been the hardest thing I've ever done. The first week or so was the worst. The last week or so, I felt like there was a light at the end of the tunnel. In between is a blur of 4-hour vitals, daily labs, beeping infusion pumps, walking laps around the unit, measured urine, hospital meals, countless cups of ice water, and the taste of saline in my nose and throat. My counts dropped very late in the game (Day +14) so they finally gave me a shot of neupogen, that, while insanely painful, worked very well. It continued to work for three days. Once my White Blood Cell (WBC) count was high enough, I was discharged.
It felt like Brandon hugged me for an hour outside the hospital door. When I got in the car, Jazz pretended to be asleep, but once we got to the hotel, he had plenty to say. The first thing he did we show me his new ninja turtle shoes, and told me the character's names. Too cool. I cried, holding Jazz that evening, smelling his hair. I felt like I could finally sleep, now that I was back next to my husband, no midnight vitals and 4 am labs, no tubes connecting me to an IV pole.
Now, don't get me wrong. Physically, this was not as bad as my last transplant. It was a "reduced intensity chemo" because it didn't need to devastate my bone marrow this time. Also, being inpatient meant that I had food, medication, and life-saving help at the press of a button.
The biggest part was mental. Being isolated. Being away from my friends, being away the family that makes me whole. You can tell yourself a million times that your going away for a month to buy yourself years or even decades. (I did.) But once you're there.... once I was there... The sadness and longing is indescribable.
So. Tomorrow, we will be drawing some extra blood, checking to see how well Laura's cells are taking over my immune system. We will have results in 7-10 days. Until then, I go to the outpatient BMT clinic every other day for labs and transfusions. I always get two bags of magnesium when I go in, and it turns out I'm very sensitive to it. They have to run it for three hours instead of the regular two, and I still feel terrible for the rest of the day.
But there is still so much to be thankful for. I keep reminding myself of that. I don't feel tumors climbing up my throat. I can breathe. I am getting stronger every week.
Living in a tiny hotel room with two other people, one being a particularly sensitive and defiant toddler, in a busy and expensive city, away from the place we made home, is very very hard. It's so wonderful to be together again, but it's still so hard. But I'm so thankful to feel the wind again, to be with my family, to walk without lugging around an IV pole. It's hard. But I'm thankful.
60 some days to go.
Monday, April 7, 2014
Day -3
We arrived at 7:30 am Friday morning (day -6). I got my first round of chemo, Fludarabine, and after many long hours without food or drink later, I finally had the trifusion catheter placed in my chest. There was some vomiting, and pain pills over night, and more vomiting, but by the next day, I felt alright. I'm given Klonopin at regular intervals as an anti-seizure precaution, so that keeps me sleepy and/or loopy for good parts of the day. On Saturday, (day -5) I received another dose of Fludarabine, and another chemo called Busulfan. Same thing, Fludarabine and Busulfan, on Sunday (day -4). Now it's Monday, day -3, and I've had my Fludarabine, stool softeners, Klonopins, blood-thinner shots to the tummy, and Lazix to drain off the many pounds of fluids my body's accumulated. Feeling much lighter now, for sure!
So. Some pros I've found to doing this chunk of the journey inpatient:
*Super nice nurses and aides that come to help at the push of a button. This includes bringing chocolate pudding. Happy Sara.
*Food that is ordered by phone and delivered to your bed. Awesome.
*And the best part? A kindly female aide comes and covers my boob/trifusion catheter with tagaderm adhesive, so I don't have to awkwardly tape saran wrap to my chest every day!
Tomorrow is more chemo, the next day is the "rest day," and then Thursday, April 10th, is day zero, when I receive Laura's stem cells, and we all think happy thoughts of engraftment and new healthy immune systems and sloths and a cancer-free future.
Sorry folks. Klonopin's kicking in.
So. Some pros I've found to doing this chunk of the journey inpatient:
*Super nice nurses and aides that come to help at the push of a button. This includes bringing chocolate pudding. Happy Sara.
*Food that is ordered by phone and delivered to your bed. Awesome.
*And the best part? A kindly female aide comes and covers my boob/trifusion catheter with tagaderm adhesive, so I don't have to awkwardly tape saran wrap to my chest every day!
Tomorrow is more chemo, the next day is the "rest day," and then Thursday, April 10th, is day zero, when I receive Laura's stem cells, and we all think happy thoughts of engraftment and new healthy immune systems and sloths and a cancer-free future.
Sorry folks. Klonopin's kicking in.
Tuesday, April 1, 2014
Bonus day
A few changes in the schedule, for those still following along. I will be checking in on Friday, April 4th, moving the rest of our schedule forward one day. So my "re-birthday" will be April 10th. The consent conference is tomorrow morning, where we'll go over everything and sign papers and whatnot. I also decided to go ahead and get my catheter put in my chest again, instead of getting a PICC line in my arm. As annoying as it is to shower, and as creepy and uncomfortable as a central line is, it seems to be the easier to hide and the sturdier of the choices. Both good ideas when eventually dealing with a snuggly and energetic toddler. So, you know. Ugh. Anyhoo.
Jazz and I had one last play date with my best friend Kelsey and her son. She's due to have her second baby any day now, and I'm sad that I won't be here for her. But I know she'll send pictures and text me randomly. I'll miss our play dates so much.
So I have tomorrow afternoon and all of Thursday with my boys. A bonus day! Maybe we'll go to the zoo if the weather is nice, or maybe we'll just snuggle up on the couch and eat snacks and watch Curious George. I'll cherish my time, and as usual, try not to think too much of the future.
See you in few days, folks.
Jazz and I had one last play date with my best friend Kelsey and her son. She's due to have her second baby any day now, and I'm sad that I won't be here for her. But I know she'll send pictures and text me randomly. I'll miss our play dates so much.
So I have tomorrow afternoon and all of Thursday with my boys. A bonus day! Maybe we'll go to the zoo if the weather is nice, or maybe we'll just snuggle up on the couch and eat snacks and watch Curious George. I'll cherish my time, and as usual, try not to think too much of the future.
See you in few days, folks.
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