As of today, I no longer have to have my IV antibiotics (neutrophil count is high enough), and I am down to 2 pills a day (anti-virals) instead of 5!
Also, I no longer have to measure every liquid that enters and leaves my body! (my electrolyte counts are up and stable) Yes, I have had to measure every drop of water I drink and every drop that comes out the other end for the last 19 days. Every. Drop. I wouldn't say that I ever got used to it, but you do what you have to do. Goodness. I'm really appreciating the little things, every little ounce of freedom I regain.
In other news, my WBC rose for the 5th day in a row! It was 2.0 yesterday, and today it was 3.5! Very cool. Thank you, Neupogen. All of my other counts were on their way up as well- potassium, magnesium, red blood cells, and most excitingly, platelets. I may never need another transfusion, if this keeps up. By the way, all of this means I have officially "engrafted"! YEAH! My stem cells like me, they really like me!
...and that was when my nurse came in and told me that all of my counts would go down again before they went up one final time on their own. Here I was thinking I might be out of here by Monday, and she shook her head and said she wouldn't be surprised if it was another "week or so." Goodness. I appreciate her honesty and experience, but I was a bit deflated. Dang, you know?
Well, I knew this wasn't going to be quick or easy. I signed up to be killed and rebuilt, for god's sake. I guess I was just getting antsy. When it's cold like this I can't even go on walks, and since I can't be around groups of people, indoor public places are kind of a no-no right now. So I stay in my room where I don't have to wear my mask and lay in bed. A LOT. I read. I watch cartoons and movies. But when it comes right down to it, I'm a people person. I love parties and get-togethers and live music shows and gatherings. I love connecting with new people. I love conversation and social interaction. And God, I miss my friends.
But I'm staying positive. I plan on blowing their minds and exceeding expectations.
Saturday, March 26, 2011
Thursday, March 24, 2011
Day +10 (3/24/11)
White blood cell counts are up for the third day in a row! I'm up to .7! (Still no immune system to speak of, but movin' on up!) Let's keep this streak alive! (Just for the record, the normal range for WBC [a.k.a. immunity] is 4.5 - 11.) I hope to hit 4.5 by Wednesday. Setting the bar kind of high there, I know, but I'm hoping that they'll just take off one of these days and soar.
In other news, I didn't need any transfusions today other than my daily antibiotics. My platelets are getting low again, so I will probabaly be getting those tomorrow. Platelets are the last counts to recover. Once they get back up to 50 on their own (I'm currently at 18) I get to be discharged and get this tube out of my neck! (Quick side note: Let me just say that I love the fact that I have this trifusion catheter. Every blood draw, every transfusion is fast, sterile and painless because of it. It is an amazing piece of medical equipment and I'm so glad that I've had it. But it's still a bit of a pain in the ass.)
My hair is falling out for the last time. I'm glad to be starting fresh.
Other than that, not much to report. Too cold for a walk today, so I'm gazing out the window into blue skies streaked with clouds. I keep thinking that before I know it, It'll be my 25th birthday, and I'll be eating cupcakes in a park somewhere, no hospital mask covering my face.
In other news, I didn't need any transfusions today other than my daily antibiotics. My platelets are getting low again, so I will probabaly be getting those tomorrow. Platelets are the last counts to recover. Once they get back up to 50 on their own (I'm currently at 18) I get to be discharged and get this tube out of my neck! (Quick side note: Let me just say that I love the fact that I have this trifusion catheter. Every blood draw, every transfusion is fast, sterile and painless because of it. It is an amazing piece of medical equipment and I'm so glad that I've had it. But it's still a bit of a pain in the ass.)
My hair is falling out for the last time. I'm glad to be starting fresh.
Other than that, not much to report. Too cold for a walk today, so I'm gazing out the window into blue skies streaked with clouds. I keep thinking that before I know it, It'll be my 25th birthday, and I'll be eating cupcakes in a park somewhere, no hospital mask covering my face.
Wednesday, March 23, 2011
Day +9 (3/23/11)
This last week has been pretty rough. (But keep in mind, not so rough compared to most people's experiences.)
The exhaustion is pretty intense. Just walking to the car and standing in the shower have been quite the tasks. I've spent most of my days getting up to go to the clinic, getting drips of potassium, platelets, or blood transfusions (whichever I'm low on that day) then, if it's nice out and I'm feeling up to it, taking a very short walk, (in my mask, of course) then going back to the lodge and crawling into bed. The mouth sores have gotten to the point where I can't really eat solid food, but I feel like they're finally starting to get better. On the upside, we get all the Ensure we can drink for free here. And it's yummy. Like runny pudding. I like it.
I finally spiked a fever for the first time yesterday, and I had to have a bunch of blood cultures done and an antibiotic drip for the next 7 days, or until I have an immune system again. My favorite nurse in the whole world, Shelly, said that 9 times out of 10, it's not an infection, but a Neutropenic fever. My body is busy busy busy making new cells, and that can cause a spike in temp. But, hey, better safe than sorry when you only have 100 or so white blood cells floating around your body.
Other news, my white blood cell count has gone up for the second day in a row! (also up from yesterday: potassium, red blood cells, and hemoglobin!) I still have no immunity, but it's a great sign. For the last week or so, my WBC (white blood cell count) has been .1, or as the nurses say, "bottom of the barrel." As low as can be measured. On Monday, it went up to .2, then on Tuesday, It went back down to .1. Today, it was .4! Progress! I'm so stoked to watch it climb. I'll have this tube out of my chest before I know it!
I feel like this part of the journey is nearing an end. If my counts just keep going up, I'll be able to go home soon. I still have to be extra extra careful for the 100 days post-transplant, but at least I'll be home, closer to friends and in my own bed.
I promise I will be better at keeping you posted. It's just felt like lately the exhaustion spread from my body into my mind. Now that I'm feeling a bit better, my mind is perking up too.
And as always, I'm trying to keep it positive. Succeeding, more often than not. This whole experience is making me appreciate all of the little things. I will never take those things for granted again. Just eating at a restaurant, a simple shower, a long walk in the park, a damn good salad, (no lettuce allowed in the Neutropenic diet), just the freedom of walking outside and smelling the breeze, no mask on my face. Freedom, in general.
I am so very grateful to still be alive. I can't wait to get out and live again.
The exhaustion is pretty intense. Just walking to the car and standing in the shower have been quite the tasks. I've spent most of my days getting up to go to the clinic, getting drips of potassium, platelets, or blood transfusions (whichever I'm low on that day) then, if it's nice out and I'm feeling up to it, taking a very short walk, (in my mask, of course) then going back to the lodge and crawling into bed. The mouth sores have gotten to the point where I can't really eat solid food, but I feel like they're finally starting to get better. On the upside, we get all the Ensure we can drink for free here. And it's yummy. Like runny pudding. I like it.
I finally spiked a fever for the first time yesterday, and I had to have a bunch of blood cultures done and an antibiotic drip for the next 7 days, or until I have an immune system again. My favorite nurse in the whole world, Shelly, said that 9 times out of 10, it's not an infection, but a Neutropenic fever. My body is busy busy busy making new cells, and that can cause a spike in temp. But, hey, better safe than sorry when you only have 100 or so white blood cells floating around your body.
Other news, my white blood cell count has gone up for the second day in a row! (also up from yesterday: potassium, red blood cells, and hemoglobin!) I still have no immunity, but it's a great sign. For the last week or so, my WBC (white blood cell count) has been .1, or as the nurses say, "bottom of the barrel." As low as can be measured. On Monday, it went up to .2, then on Tuesday, It went back down to .1. Today, it was .4! Progress! I'm so stoked to watch it climb. I'll have this tube out of my chest before I know it!
I feel like this part of the journey is nearing an end. If my counts just keep going up, I'll be able to go home soon. I still have to be extra extra careful for the 100 days post-transplant, but at least I'll be home, closer to friends and in my own bed.
I promise I will be better at keeping you posted. It's just felt like lately the exhaustion spread from my body into my mind. Now that I'm feeling a bit better, my mind is perking up too.
And as always, I'm trying to keep it positive. Succeeding, more often than not. This whole experience is making me appreciate all of the little things. I will never take those things for granted again. Just eating at a restaurant, a simple shower, a long walk in the park, a damn good salad, (no lettuce allowed in the Neutropenic diet), just the freedom of walking outside and smelling the breeze, no mask on my face. Freedom, in general.
I am so very grateful to still be alive. I can't wait to get out and live again.
Wednesday, March 16, 2011
Day +2 (3/16/11)
I have all sorts of good news to share.
First of all, as of yesterday, I am no longer attached to any sort of backpack or fannypack 24/7! When chemo began on the 7th, they had me hooked up to a backpack holding a bag of nausea meds and a liter bag of Mesna, a drug that counteracts the bladder-irritating side-effects of a component of the chemo drugs. Then, last week, they downgraded me to a fannypack when all I needed was the nausea meds, since it's a tiny bag. Well, after passing out twice Saturday night (first time for everything...) they had me hooked back up to the backpack so I could get fluids constantly. So, basically, I have had a bag of some sort attached to the tubes hanging out of my chest since last monday. Having it off has been freeing, to say the least! And not to mention, it makes showering an easier task. (I still have to tape saran wrap over the ol' chest tubes, though.)
The second good news that happened yesterday is that I am already Neutropenic. (no white blood cells, no immunity) This is good news on many levels. It means that the chemo is working and the stem cells are already hard at work killing the last of the old cells. We were under the impression that it would be a few days before this happened, so we are ahead of schedule!
So now, we continue to go to the clinic every morning for labs, where they will moniter my blood levels, watching for them to rise, and they will give me transfusions of anything I'm low on: Magnesium, platelets, electrolytes, etc. Or in today's case, Potassium.
On Saturday (Day +5) I will begin recieveing low-dose Neupogen shots to help get the show on the road in my bone marrow. Hopefully it won't take long for engraftment to occur, and for me to be able to go outside without a hospital mask again!
Until engraftment, I continue to live with the ultimate mindfulness. One infection and this transplant patient could be in trouble. So I take my anti-fungal, anti-viral and anti-bacterial meds, wash wash wash my hands, eat according to the Nuetropenic diet, wear my hospital mask and try to stay in my room as much as possible.
Before long, my counts will be back up, and who knows, I might just get some energy back. This fatigue is fierce!
This has been a week of huge hurdles jumped and good news all around. So far, everything is going better than expected with my progress.
Thank you for celebrating all of my little successes with me.
First of all, as of yesterday, I am no longer attached to any sort of backpack or fannypack 24/7! When chemo began on the 7th, they had me hooked up to a backpack holding a bag of nausea meds and a liter bag of Mesna, a drug that counteracts the bladder-irritating side-effects of a component of the chemo drugs. Then, last week, they downgraded me to a fannypack when all I needed was the nausea meds, since it's a tiny bag. Well, after passing out twice Saturday night (first time for everything...) they had me hooked back up to the backpack so I could get fluids constantly. So, basically, I have had a bag of some sort attached to the tubes hanging out of my chest since last monday. Having it off has been freeing, to say the least! And not to mention, it makes showering an easier task. (I still have to tape saran wrap over the ol' chest tubes, though.)
The second good news that happened yesterday is that I am already Neutropenic. (no white blood cells, no immunity) This is good news on many levels. It means that the chemo is working and the stem cells are already hard at work killing the last of the old cells. We were under the impression that it would be a few days before this happened, so we are ahead of schedule!
So now, we continue to go to the clinic every morning for labs, where they will moniter my blood levels, watching for them to rise, and they will give me transfusions of anything I'm low on: Magnesium, platelets, electrolytes, etc. Or in today's case, Potassium.
On Saturday (Day +5) I will begin recieveing low-dose Neupogen shots to help get the show on the road in my bone marrow. Hopefully it won't take long for engraftment to occur, and for me to be able to go outside without a hospital mask again!
Until engraftment, I continue to live with the ultimate mindfulness. One infection and this transplant patient could be in trouble. So I take my anti-fungal, anti-viral and anti-bacterial meds, wash wash wash my hands, eat according to the Nuetropenic diet, wear my hospital mask and try to stay in my room as much as possible.
Before long, my counts will be back up, and who knows, I might just get some energy back. This fatigue is fierce!
This has been a week of huge hurdles jumped and good news all around. So far, everything is going better than expected with my progress.
Thank you for celebrating all of my little successes with me.
Monday, March 14, 2011
Day 0 / My Re-Birthday!
Today was the big day. At about 12:0o pm, I was given my stem cells back through my central line. That's right. Stem cell slushy, straight to the heart. It was strange, as you might imagine. It tasted like creamed corn and my chest felt tight. I felt overheated and very cold at the same time. But less than ten minutes and two huge syringes later, I was reborn.
They took my vitals every 15 minutes for an hour afterward, and then I was on my way. Heck, I'd say the most uncomfortable part wasn't even the transplant itself, but when they gave me a syringe of Benedryl before the whole thing to prevent any allergic reaction. Straight to the heart, and I felt druuuunk. But luckily, that feeling faded after a while.
So here I am, back in my cozy room at the Hope Lodge. I'm very weak, phsically. Mentally, I'm exhausted. I already want to be home.
The next step is engraftment. In the next few days, my blood levels will drop into Neutropenia, and then, once the stem cells take, my levels will rise back up again. Basically, it's going to be a loooong 2-3 weeks of going to the clinic every morning for labs and transfusions. Two to three weeks of hospital masks and extreme cleanliness and dietary restrictions.
It's going to be a long month.
I need to make this positive. So, here's to new beginnings, my friends. To health and happiness. To appreciating every meal I eat and every breath I take.
Here's to starting over, cancer-free.
They took my vitals every 15 minutes for an hour afterward, and then I was on my way. Heck, I'd say the most uncomfortable part wasn't even the transplant itself, but when they gave me a syringe of Benedryl before the whole thing to prevent any allergic reaction. Straight to the heart, and I felt druuuunk. But luckily, that feeling faded after a while.
So here I am, back in my cozy room at the Hope Lodge. I'm very weak, phsically. Mentally, I'm exhausted. I already want to be home.
The next step is engraftment. In the next few days, my blood levels will drop into Neutropenia, and then, once the stem cells take, my levels will rise back up again. Basically, it's going to be a loooong 2-3 weeks of going to the clinic every morning for labs and transfusions. Two to three weeks of hospital masks and extreme cleanliness and dietary restrictions.
It's going to be a long month.
I need to make this positive. So, here's to new beginnings, my friends. To health and happiness. To appreciating every meal I eat and every breath I take.
Here's to starting over, cancer-free.
Saturday, March 12, 2011
Day -2 (3/12/11)
I finished the last chemo of my life yesterday. 5 days straight, 9 doses. Heavy duty.
As you can imagine, I feel horrible.
Today, we got to the clinic by 8am and my wonderful nurse Shelly drew blood for labs. I got a bag of Zofran (an anti-emetic) pumped into me and have now been sitting through 3 hours of Potassium drips, as per my lab results. I'm just glad there's no more chemo.
I sleep a lot. In and out of some sort of snooze... So tired. And so VERY nauseated.
Tomorrow I'll be back here at 8am for labs and more Zofran, and then Monday is the big day. Stem cell transplant day.
I just keep telling myself that soon, I'll be well. That this won't last forever. That I'll be okay someday.
A blissful, cancer-free, 25 year old...
I put my headphones back in and drift away...
As you can imagine, I feel horrible.
Today, we got to the clinic by 8am and my wonderful nurse Shelly drew blood for labs. I got a bag of Zofran (an anti-emetic) pumped into me and have now been sitting through 3 hours of Potassium drips, as per my lab results. I'm just glad there's no more chemo.
I sleep a lot. In and out of some sort of snooze... So tired. And so VERY nauseated.
Tomorrow I'll be back here at 8am for labs and more Zofran, and then Monday is the big day. Stem cell transplant day.
I just keep telling myself that soon, I'll be well. That this won't last forever. That I'll be okay someday.
A blissful, cancer-free, 25 year old...
I put my headphones back in and drift away...
Wednesday, March 9, 2011
Day -5 / Chemo 3 of 5 (3/9/11)
Same routine today: At the clinic by 7am, fluids, pre-meds and then chemo until about 1:30pm. Back to Hope Lodge for a few hours, back to the clinic 5pm until about 6:30pm.
I feel fatigued and nauseated. The nausea meds make me super sleepy, so I do a lot of sleeping now.
Two more days. I'm over half way done with the last chemo of my life.
In the wise words of CSNY: "Rejoice, rejoice/ we have no choice/ but to carry on..."
I feel fatigued and nauseated. The nausea meds make me super sleepy, so I do a lot of sleeping now.
Two more days. I'm over half way done with the last chemo of my life.
In the wise words of CSNY: "Rejoice, rejoice/ we have no choice/ but to carry on..."
Tuesday, March 8, 2011
Day -6 / Chemo 2 of 5 (3/8/11)
Today went smoothly. I'm starting to get into a routine of sorts. I arrived at the clinic at 7 am, where they got me into a room and drew blood for my labs. Once labs came back looking groovy, we started today's chemo. I was there until about 1:30, and am now reclined on my little bed at Hope Lodge. I have to go back to the clinic at 5pm tonight for more chemo, which will only take another hour and a half. That's a lot of chemo in a day, folks. But that's the point. Hit it hard and quick. Make sure those stubborn little cancer cells are gone forever. I just think about that, and I feel like I can take whatever is coming next.
I just want to be free from this disease. Free again, period.
Tomorrow, Thursday and Friday, same routine as today. Then, I have two days of "rest." (I still go to the clinic for other meds) and then Monday is the big day. Eat a cupcake for me. Help me celebrate my rebirthday.
After Monday, there is a good chance that things will suck. I will most likely be very very ill for a while. But you know what? NO MORE CHEMO. EVER. That is worth it all. I just have to get through this, and soon, it will all just be a fuzzy memory.
I just want to be free from this disease. Free again, period.
Tomorrow, Thursday and Friday, same routine as today. Then, I have two days of "rest." (I still go to the clinic for other meds) and then Monday is the big day. Eat a cupcake for me. Help me celebrate my rebirthday.
After Monday, there is a good chance that things will suck. I will most likely be very very ill for a while. But you know what? NO MORE CHEMO. EVER. That is worth it all. I just have to get through this, and soon, it will all just be a fuzzy memory.
Monday, March 7, 2011
Day -7 / Chemo 1 of 5 (3/7/11)
Good morning, friends.
In the last few weeks, things have proceeded beautifully for the most part. Hurdles have been jumped. Maybe not with ease, and not without fear, but thanks to the support of the wonderful people in my life and the faith they've given me in myself, there has been nothing so far that I can't conquer.
The first hurdle of the transplant process was the Neupogen shots. For those of you that have been following along, you know that I was a bit apprehensive because of a past experience involving excruciating pain with this particular medicine. For four days straight, I received double doses in the form of injections into my belly. I didn't have any pain that some Tylenol couldn't dull. Hurdle jumped. Bring on the next.
The second big event was the placement of my Trifusion catheter. Surgery while awake and drugged, tubes hanging out of my chest until April. Entered surgery calm, woke calm. I was shoving dumplings down my throat by evening. Hurdle jumped. Give me another.
The third and biggest event, until today, was The Harvest. In the apheresis unit in KU Med, I was set up in a recliner and tubes were hooked up to my catheter. (There are three tubes that come off my catheter called lumens. Learning is fun!) One tube (attached to the left-most lumen that I named "Newman") drew blood out into the apheresis machine, where it centrifuged it and sucked the stem cells out and into a bag above. Another tube (attached to the middle lumen I dubbed "Jake") ran the rest of my blood (plateletes, red blood cells) back into my body. The third tube ("Truman" the lumen) was attached to bags of calcium, which were pumped into me to ease the tingly sensation the process causes when it leeches your calcium out with the stem cells. I sat for 5 or 6 hours. I peed in a cute little hidden toilet under the sink. (Due to the whole "being attached to a huge machine" thing, I couldn't leave the room.) And by the end of the day, we had not only collected enough stem cells that I didn't have to come back and do anymore harvesting, but we actually got more than we needed! All in one sitting. Told you I was a champ!
Today is the beginning of the biggest hurdle yet. The first day of chemo. In transplant-speak, this is day -7. After today's 10 hour day at the clinic, I will come here twice a day everyday this week and receive chemo. (days "-6" through "-3", I believe.) This is the most brutal chemo I will have ever had. It will destroy me. (That's the point, after all.)
Day "0", Monday, March 14th, is my re-birthday. The day of my transplant, when my stem cells are pushed back into me. I will continue to take handfuls of pills and have bags attached to me for fluids and anti-nausea meds around the clock. We will wait for the cells to take effect. And when that happens, I will rise from the ashes, reborn, cancer-free. It will be a long recovery, but eventually, I will get less sick every day, stronger each week. I will come back from this stronger and wiser than before. It just might take a while. Note to future Sara: Be patient with yourself. You're a newborn, after all.
Well, here goes. I will update as frequently as possible, promise. I'm looking at a month of recovery in Kansas City. It's not so much a question of having the time to write, It's more about finding my mind.
Day 1 of the last chemo of my life. Let's do this.
In the last few weeks, things have proceeded beautifully for the most part. Hurdles have been jumped. Maybe not with ease, and not without fear, but thanks to the support of the wonderful people in my life and the faith they've given me in myself, there has been nothing so far that I can't conquer.
The first hurdle of the transplant process was the Neupogen shots. For those of you that have been following along, you know that I was a bit apprehensive because of a past experience involving excruciating pain with this particular medicine. For four days straight, I received double doses in the form of injections into my belly. I didn't have any pain that some Tylenol couldn't dull. Hurdle jumped. Bring on the next.
The second big event was the placement of my Trifusion catheter. Surgery while awake and drugged, tubes hanging out of my chest until April. Entered surgery calm, woke calm. I was shoving dumplings down my throat by evening. Hurdle jumped. Give me another.
The third and biggest event, until today, was The Harvest. In the apheresis unit in KU Med, I was set up in a recliner and tubes were hooked up to my catheter. (There are three tubes that come off my catheter called lumens. Learning is fun!) One tube (attached to the left-most lumen that I named "Newman") drew blood out into the apheresis machine, where it centrifuged it and sucked the stem cells out and into a bag above. Another tube (attached to the middle lumen I dubbed "Jake") ran the rest of my blood (plateletes, red blood cells) back into my body. The third tube ("Truman" the lumen) was attached to bags of calcium, which were pumped into me to ease the tingly sensation the process causes when it leeches your calcium out with the stem cells. I sat for 5 or 6 hours. I peed in a cute little hidden toilet under the sink. (Due to the whole "being attached to a huge machine" thing, I couldn't leave the room.) And by the end of the day, we had not only collected enough stem cells that I didn't have to come back and do anymore harvesting, but we actually got more than we needed! All in one sitting. Told you I was a champ!
Today is the beginning of the biggest hurdle yet. The first day of chemo. In transplant-speak, this is day -7. After today's 10 hour day at the clinic, I will come here twice a day everyday this week and receive chemo. (days "-6" through "-3", I believe.) This is the most brutal chemo I will have ever had. It will destroy me. (That's the point, after all.)
Day "0", Monday, March 14th, is my re-birthday. The day of my transplant, when my stem cells are pushed back into me. I will continue to take handfuls of pills and have bags attached to me for fluids and anti-nausea meds around the clock. We will wait for the cells to take effect. And when that happens, I will rise from the ashes, reborn, cancer-free. It will be a long recovery, but eventually, I will get less sick every day, stronger each week. I will come back from this stronger and wiser than before. It just might take a while. Note to future Sara: Be patient with yourself. You're a newborn, after all.
Well, here goes. I will update as frequently as possible, promise. I'm looking at a month of recovery in Kansas City. It's not so much a question of having the time to write, It's more about finding my mind.
Day 1 of the last chemo of my life. Let's do this.
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