So I guess the best way to describe what I've been busy with lately is nesting.
Brandon and I have been working on the house a lot, cleaning, organizing, making space. The garage sale definitely freed up some area in the storage room, but we still have a ways to go to make room for baby. Aside from that, I've been acquiring and filling out paperwork: marriage license stuff, applying for food assistance (we've definitely been racking our brains trying to figure out how to live on one Barista's meager salary), trying to figure out if I'm getting the right Medicaid coverage for my new non-cancerous situation. It's a freaking full time job.
On top of those recent activities, we have an ultrasound scheduled Thursday, where hopefully we'll find out the gender! Squee! Although, from what I've seen so far, the little one does NOT like to be bothered, thankyouverymuch. Anytime we've tried to listen to it's heartbeat, it kicks the probe! Let's hope it feels like showing off come Thursday. After the ultrasound, we'll start going to the Birth and Women's Center for our prenatal care and eventually, delivery. Some people think I'm crazy for wanting a birth outside a hospital without being numbed up and drugged out, but I just feel very comfortable at the birthing center. It's not sterile and reeking of alcohol. No stainless steel and beeps of monitors. It feels right. The way I see it is, I'm not sick anymore. And seeing as hospitals are for sick people, (and I'm not even considered high risk) I don't see a need to be in a hospital for this amazing event. Hospitals are for treating and curing disease, and for the first time in a long while, I'm disease free. The last thing I want is to turn the most natural process in the world into something involving tubes hanging out of me. Bad memories, you know? Anyhoo, after the 28 week mark, we start having appointments every two weeks instead of every four, and then there are birthing classes to attend, and I still have my check ups at the Cancer Center... whew. Busy busy, you see?
On top of all of that, I'm still hanging on to a couple of shifts at PT's. Although it's slowly been getting harder and harder to work my two little four-hour shifts a week lately. I feel like I never really got a chance to recover fully from the transplant when it comes to strength, energy and stamina, and now that I'm getting larger by the week, (and oh, how those abdominal muscles are stretching...) the little tasks that are integral to being a Barista are getting more challenging to do. You know, I didn't really realize how much strength and stamina working at a coffee shop took until the first round of cancer treatment. The all-around fast-paced environment, walking and standing all day, the repetitive arm motion of dosing out espresso, the abdominal muscles used for tamping, the strength it takes to lift an air pot full of coffee... it's a physically demanding job. You just don't notice when you're normal and healthy. Being a Barista, if you're a good one, is non-stop. Even when it's a slow day, you're washing dishes, taking out heavy loads of trash, wiping down tables, deep cleaning, sweeping, stocking... I managed to keep up while going through chemo and radiation the first time, (barely, some days) but honestly, I feel like I never really was able to preform as well after the transplant. Before I got back to 100%, I got pregnant. So, basically, I think my time has finally come to leave the wonderful world of Barista-ing behind me. I know I'm going to miss it big time, but I also know that my PT's family will still be there for me even if I'm not on the payroll anymore. I really do feel like PT's is my family. They will always live true to their motto: "Without the love, it's just coffee."
Besides, I'm giving up my 6 ounces of daily coffee cold turkey starting November 1st until I'm done breastfeeding. Eeek! You, know, I'm thinking I should probably just stay in bed for that week so no one has to deal with the grumpy pregnant chick going through withdrawal. But anything for the wee one, I say. :)
Well, I've rambled long enough. There is laundry to finish and home-made banana bread to be eaten. Next time I check in, I'll be knee-deep in either boy or girl baby names!
Much love!
Monday, October 17, 2011
Wednesday, September 21, 2011
The only constant
So, maybe you've noticed my lack of blogging in the last 4 months. Sorry about that. Life has changed in about every way possible. Throw writer's block on top of that, and you have a very silent blog on your hands.
Brandon pointed out the other day that maybe I'm having trouble writing here because this isn't a cancer blog anymore. It's a "life after cancer" blog. It's a "done with cancer forever" blog. Maybe the reason I haven't been able to write is that this blog has to change as much as my life has. So, may I present to you... my "life after kicking cancer's ass" blog. Some important updates:
I got a clean CT scan in June. That's right. Get out and stay out, tumors!
There was something growing inside of me that the CT scan missed. I'm pregnant! More on that seeming impossibility in a bit.
I'm now engaged to a smart, devoted, caring man named Brandon. He was one of my caregivers while I went through my transplant in KC. His smiles and friendship got me through some of my darkest days. He's a born giver. He takes care of me, loves me, and loves to be with me every moment. Besides, how could you not fall in love with a man that says you're the most beautiful girl he's ever seen while you're bald, eyebrow-less, pale, have a tube hanging out of a hole in your chest, and are wearing a hospital mask? He's amazing. He's everything I've ever wanted. Gush gush gush.
Now back to the big news. I'm pregnant. You're probably thinking the same thing I was when I was holding that positive pregnancy test all those weeks ago: "Holy crap! Didn't the doctors say that was impossible?!" Yes, they made it pretty clear that the transplant would most likely make me completely infertile. The point was driven home when I experienced menopause from March through June. No period, constant hot flashes, the works. Well, it turns out that the universe had other plans. In fact, I was probably about four weeks along when I got my CT scan in June! I'm due February 28th, and I'm so so so excited. I thought that I would never get the chance to be a mother... that it was a gift that had been taken away in return for surviving. I thought the only thing that could grow inside of me was cancer. Sometimes, It's awesome to be wrong.
As of today, I am officially 17 weeks pregnant. In fact, this morning, I felt the baby kick! I placed Brandon's hand on my tummy, and watched his face light up as he felt the little movement, too. So freaking neat! I can't tell if the baby was so active because it's a morning person like me, or because it was annoyed that I was awake so damn early, like it's father. Either way, it was an experience that when I thought about it before it happened, seemed sort of creepy. But when I felt it, I knew immediately what it was. And it felt like the most natural thing in the world.
Anyhoo, I promise you this, faithful readers: I will be updating weekly. And while this blog will still have updates regarding clean scans, bloodwork and doctor's visits, it will mostly be about my life as a cancer survivor, (no longer cancer patient!) a wife, a mother, a coffee geek, a bookworm, and a person who is trying to fully and abundantly live a life that she fought for.
Everything has changed, and I couldn't ask for a better life. Change is inevitable and good. What is it that Joseph Campbell said?
"We must let go of the life we have planned, so as to have the life that is waiting for us."
Brandon pointed out the other day that maybe I'm having trouble writing here because this isn't a cancer blog anymore. It's a "life after cancer" blog. It's a "done with cancer forever" blog. Maybe the reason I haven't been able to write is that this blog has to change as much as my life has. So, may I present to you... my "life after kicking cancer's ass" blog. Some important updates:
I got a clean CT scan in June. That's right. Get out and stay out, tumors!
There was something growing inside of me that the CT scan missed. I'm pregnant! More on that seeming impossibility in a bit.
I'm now engaged to a smart, devoted, caring man named Brandon. He was one of my caregivers while I went through my transplant in KC. His smiles and friendship got me through some of my darkest days. He's a born giver. He takes care of me, loves me, and loves to be with me every moment. Besides, how could you not fall in love with a man that says you're the most beautiful girl he's ever seen while you're bald, eyebrow-less, pale, have a tube hanging out of a hole in your chest, and are wearing a hospital mask? He's amazing. He's everything I've ever wanted. Gush gush gush.
Now back to the big news. I'm pregnant. You're probably thinking the same thing I was when I was holding that positive pregnancy test all those weeks ago: "Holy crap! Didn't the doctors say that was impossible?!" Yes, they made it pretty clear that the transplant would most likely make me completely infertile. The point was driven home when I experienced menopause from March through June. No period, constant hot flashes, the works. Well, it turns out that the universe had other plans. In fact, I was probably about four weeks along when I got my CT scan in June! I'm due February 28th, and I'm so so so excited. I thought that I would never get the chance to be a mother... that it was a gift that had been taken away in return for surviving. I thought the only thing that could grow inside of me was cancer. Sometimes, It's awesome to be wrong.
As of today, I am officially 17 weeks pregnant. In fact, this morning, I felt the baby kick! I placed Brandon's hand on my tummy, and watched his face light up as he felt the little movement, too. So freaking neat! I can't tell if the baby was so active because it's a morning person like me, or because it was annoyed that I was awake so damn early, like it's father. Either way, it was an experience that when I thought about it before it happened, seemed sort of creepy. But when I felt it, I knew immediately what it was. And it felt like the most natural thing in the world.
Anyhoo, I promise you this, faithful readers: I will be updating weekly. And while this blog will still have updates regarding clean scans, bloodwork and doctor's visits, it will mostly be about my life as a cancer survivor, (no longer cancer patient!) a wife, a mother, a coffee geek, a bookworm, and a person who is trying to fully and abundantly live a life that she fought for.
Everything has changed, and I couldn't ask for a better life. Change is inevitable and good. What is it that Joseph Campbell said?
"We must let go of the life we have planned, so as to have the life that is waiting for us."
Monday, May 30, 2011
Monday, April 4, 2011
Day +21 (4/4/11)
An update for all you patient folks out there.
I was officially discharged back to Topeka on Wednesday last week (day +16, which is pretty damn early) and I had my trifusion catheter yanked last Friday. The hole in my chest is healing beautifully, which makes me think that my blood counts are rising.
I feel pretty good, all things considered. Being home makes such a huge difference. Having a whole house to be isolated in instead of a small room in an unfamiliar place has given me strength and energy that I didn't know I could have. Hope Lodge was an absolute blessing, and I'm so SO glad this ordeal wasn't inpatient. But it's good to be back.
There are still restrictions to follow. Neutropenic diet until +30 days post-transplant, no public places until the end of April (respiratory viruses floating around), no drinking alcohol for 3 months, limited sun exposure, no swimming for 9-12 months.
But I can go outside without a hospital mask on. I can feel the breeze on my face and smell springtime in Kansas. I can go to friends houses as long as there isn't a crowd of people or animal feces laying around. Life is good.
I have bloodwork and a doctor visit here in town at St. Francis tomorrow. I'm excited to see how much my blood counts have risen. A bit nervous about the possibility that they haven't.
I was officially discharged back to Topeka on Wednesday last week (day +16, which is pretty damn early) and I had my trifusion catheter yanked last Friday. The hole in my chest is healing beautifully, which makes me think that my blood counts are rising.
I feel pretty good, all things considered. Being home makes such a huge difference. Having a whole house to be isolated in instead of a small room in an unfamiliar place has given me strength and energy that I didn't know I could have. Hope Lodge was an absolute blessing, and I'm so SO glad this ordeal wasn't inpatient. But it's good to be back.
There are still restrictions to follow. Neutropenic diet until +30 days post-transplant, no public places until the end of April (respiratory viruses floating around), no drinking alcohol for 3 months, limited sun exposure, no swimming for 9-12 months.
But I can go outside without a hospital mask on. I can feel the breeze on my face and smell springtime in Kansas. I can go to friends houses as long as there isn't a crowd of people or animal feces laying around. Life is good.
I have bloodwork and a doctor visit here in town at St. Francis tomorrow. I'm excited to see how much my blood counts have risen. A bit nervous about the possibility that they haven't.
Saturday, March 26, 2011
Day +12 (3/26/11)
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.
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.
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.
Thursday, February 24, 2011
The journey begins (2/23/11)
Allow me to get you up to date.
On Monday, I got the call from SRS that my Medicaid had gone through. Happy dance! By Tuesday, Gayle (my awesome transplant coordinator) had me on the schedule starting Thursday to begin the transplant process.
That gets us to today. Mom and I drove up to Kansas City and got settled into the Hope Lodge (a free hotel for cancer patients who are coming in from out of town for their treatments) and I just got my first Neupogen injection an hour ago. They give it to you in your belly here (as opposed to the back of the arm like they do in Topeka.) That was different. Burny. I'm trying to stay positive, centered, calm... but there is a part of me anticipating that pain again. I just have to hope for the best, prepare for the worst, and remember that all of this pain and sickness is temporary. Breathe in, breathe out.
So, this brings us to the next step- Tomorrow at 10 am is my surgery to have the Trifusion Catheter placed in my chest. Then another Neupogen injection. Saturday, another injection, and Sunday, another. By this point I should be producing enough white blood cells to choke a goat. On Monday I will begin the part where they hook me up to a dialysis sort of machine where they draw out my blood, centrifuge it, take the stem cells and give me back the rest. They say this can take up to three days. It is my aim to get it done on the first day. Like a champ.
After we collect enough stem cells, they freeze the goods and we get to go back to Topeka until Monday, March 7th. On that day (day "-7" in transplant-speak) I will begin my highest dose chemo yet. The immune system killer. I will get this for 5 days (Days "-6" through "-2") rest one day (Day "-1",) and then on day 7, (or day "0" for you cats who are now hip to the lingo) I will be given back my stem cells through my catheter, directly to my heart. (Fun fact: I will smell very strongly of garlic for 24 hours after this part. Long story short, it's because of a drug they put in the stem cell slushy to keep it from self-destructing.)
After that, we wait for "engraftment." Basically waiting to see if the stem cells took. And they will, because I'm a champ like that. Anyhoo, I'll go into greater detail about the whole "living without an immune system" stuff when we get closer to it. It's 100 days of strict rules, special dietary precautions, and (for a while) daily hospital visits. Scary stuff.
How am I? Scared but calm. Sad to see the farce of normality of the last few weeks come to an end. I miss my friends already, miss the shop, miss the freedom to just drive around on sunny days to no where in particular. Everything feels foreign. The Hope Lodge is very, very nice. Lots of sunny rooms and comfy looking chairs. I should look at this as a retreat. I have a lot of thinking to do, and I think this is the perfect place.
Think happy thoughts for me tomorrow. Much love, folks.
On Monday, I got the call from SRS that my Medicaid had gone through. Happy dance! By Tuesday, Gayle (my awesome transplant coordinator) had me on the schedule starting Thursday to begin the transplant process.
That gets us to today. Mom and I drove up to Kansas City and got settled into the Hope Lodge (a free hotel for cancer patients who are coming in from out of town for their treatments) and I just got my first Neupogen injection an hour ago. They give it to you in your belly here (as opposed to the back of the arm like they do in Topeka.) That was different. Burny. I'm trying to stay positive, centered, calm... but there is a part of me anticipating that pain again. I just have to hope for the best, prepare for the worst, and remember that all of this pain and sickness is temporary. Breathe in, breathe out.
So, this brings us to the next step- Tomorrow at 10 am is my surgery to have the Trifusion Catheter placed in my chest. Then another Neupogen injection. Saturday, another injection, and Sunday, another. By this point I should be producing enough white blood cells to choke a goat. On Monday I will begin the part where they hook me up to a dialysis sort of machine where they draw out my blood, centrifuge it, take the stem cells and give me back the rest. They say this can take up to three days. It is my aim to get it done on the first day. Like a champ.
After we collect enough stem cells, they freeze the goods and we get to go back to Topeka until Monday, March 7th. On that day (day "-7" in transplant-speak) I will begin my highest dose chemo yet. The immune system killer. I will get this for 5 days (Days "-6" through "-2") rest one day (Day "-1",) and then on day 7, (or day "0" for you cats who are now hip to the lingo) I will be given back my stem cells through my catheter, directly to my heart. (Fun fact: I will smell very strongly of garlic for 24 hours after this part. Long story short, it's because of a drug they put in the stem cell slushy to keep it from self-destructing.)
After that, we wait for "engraftment." Basically waiting to see if the stem cells took. And they will, because I'm a champ like that. Anyhoo, I'll go into greater detail about the whole "living without an immune system" stuff when we get closer to it. It's 100 days of strict rules, special dietary precautions, and (for a while) daily hospital visits. Scary stuff.
How am I? Scared but calm. Sad to see the farce of normality of the last few weeks come to an end. I miss my friends already, miss the shop, miss the freedom to just drive around on sunny days to no where in particular. Everything feels foreign. The Hope Lodge is very, very nice. Lots of sunny rooms and comfy looking chairs. I should look at this as a retreat. I have a lot of thinking to do, and I think this is the perfect place.
Think happy thoughts for me tomorrow. Much love, folks.
Monday, February 21, 2011
tick tock
Waiting for the call. Ticking away hours and minutes in the back of my head while keeping myself busy with back-to-back social engagements, good books, and that "Angry Birds" game on my iphone. Seriously, I've never done crack, but I'm pretty sure that it's like playing Angry Birds. So addictive.
Since today is a holiday, I'm supposed to hear from my Financial Coordinator, Belinda, tomorrow. It should be the call that gives us the green light for the transplant. I've never wanted something so horrible to happen to me so badly.
Please please please approve my paperwork.
I'll let you fine folks know as soon as I do.
Since today is a holiday, I'm supposed to hear from my Financial Coordinator, Belinda, tomorrow. It should be the call that gives us the green light for the transplant. I've never wanted something so horrible to happen to me so badly.
Please please please approve my paperwork.
I'll let you fine folks know as soon as I do.
Wednesday, February 16, 2011
Love above all (2/16/11)
Due to an overwhelming outpouring of support from my friends and family who selflessly and relentlessly advocated on my behalf, my financial situation is now moving along rapidly.
I'm not sure how much I should say about it, but let's just say I spoke to two very kind gentlemen on the phone this afternoon who had been alerted to my issues at SRS and assured me that due to the life-threatening nature of my condition, that they would do everything in their power to help my situation be resolved as quickly as possible. The case is now being watched closely. I will be getting the transplant very soon. I'm so happy I could cry. I feel overwhelmed by love. I can't stop smiling.
I owe a huge thank you to all of my advocates. The warriors battling beside me. Your kindness humbles and amazes me. I'm not sure what I did to deserve your love and support, but I promise I'll never stop.
You have all saved my life today. And for that, I am eternally thankful.
I promise that I'll pay forward this kindness.
Thank you.
I'm not sure how much I should say about it, but let's just say I spoke to two very kind gentlemen on the phone this afternoon who had been alerted to my issues at SRS and assured me that due to the life-threatening nature of my condition, that they would do everything in their power to help my situation be resolved as quickly as possible. The case is now being watched closely. I will be getting the transplant very soon. I'm so happy I could cry. I feel overwhelmed by love. I can't stop smiling.
I owe a huge thank you to all of my advocates. The warriors battling beside me. Your kindness humbles and amazes me. I'm not sure what I did to deserve your love and support, but I promise I'll never stop.
You have all saved my life today. And for that, I am eternally thankful.
I promise that I'll pay forward this kindness.
Thank you.
Echoes (2/16/11)
I had the honor of being in attendance at Sarah Madl's funeral today. It was a beautiful catholic mass. She passed away earlier this week after her colorectal cancer spread to other areas. She fought hard, without self-pity or dramatic flair. "Hot as a pistol/ but cool inside." She was 22.
Jon, Micah, Sarah. They're with me. Nothing is created or destroyed. We are all made of the same stuff. Stardust.
You know, as disconnected as I sometimes feel throughout this process, I have never felt more connected than I do now. Everything petty is slowly sloughing away. The duality of human existence, the us versus them, the good versus bad, right and wrong; these concepts we've given names to that we use to label and define things. It's all falling away. How could I have seen this any other way?
The fact is that I couldn't have. This is the path I'm on because it is the path I'm supposed to be on. If there was a reason, it wouldn't matter. Not to me, at least.
As painful as it is in so many ways, I am honored to walk this path. So many opportunities await.
Jon, Micah, Sarah. They're with me. Nothing is created or destroyed. We are all made of the same stuff. Stardust.
You know, as disconnected as I sometimes feel throughout this process, I have never felt more connected than I do now. Everything petty is slowly sloughing away. The duality of human existence, the us versus them, the good versus bad, right and wrong; these concepts we've given names to that we use to label and define things. It's all falling away. How could I have seen this any other way?
The fact is that I couldn't have. This is the path I'm on because it is the path I'm supposed to be on. If there was a reason, it wouldn't matter. Not to me, at least.
As painful as it is in so many ways, I am honored to walk this path. So many opportunities await.
Monday, February 14, 2011
A long awaited update (2/15/11)
This last week has been a blur. Monday and Tuesday were for wrapping up loose ends and trying to see as many friends as possible. Wednesday, I worked my last shift at the shop. I can't tell you how much I already miss that place. My home away from home, my family. I miss everyone already.
On Thursday, bright and early, I was at the KU Med BMT (bone marrow transplant) Clinic. The first day of two days of evaluations. First were labs. Carlos, my friendly phlebotomist, grabbed a handful of 10 or 12 vials, a small plastic cup and a long swab. First try, he hit the invisible little vein in my left arm like a pro (poor guy didn't have much of a choice for placement. Right hand is blown, right arm is used up at this point.) Next, he informed me as to what the cup and swab were for. I'll go ahead and let you figure that one out on your own.
Next, I had my bone marrow biopsy. With a little help from Ativan and meditation, I layed calmly on my stomach as the nurse felt the back of my pelvic bone for the right spot. Then she numbed me with lidocaine. A lot of lidocaine. First the skin, then the deeper tissue, then the area around the bone. Once I was numbed up, she inserted a large needle into my pelvic bone. I was kept awake for this procedure so at this point, I could tell her if she was hitting a nerve. I would inform her of any discomfort, and she would stop and numb me up some more. (The numbing itself was an interesting sensation. Little taptaptaptaps on my bone. No real pain. It kind of tickled. Very strange.) Eventually, she had the needle deep enough into the bone to find a decent pocket of marrow. This is the part of the procedure where the pain can't generally be controlled. The feeling of having your bone marrow sucked out is like none other. It was painful, yes. But short lived. I had a lovely nurse holding my hand and looking into my eyes. She reminded me: "Breathe." I pushed out the breath I had just sucked in and slowly filled my lungs again. One more pull on her syringe, One more short bout of pain, and that part was over. They brought the tube to my face so I could see what bone marrow looked like. A dark, thick red. Pretty cool. Next was the actual biopsy. Another, larger needle was inserted, and slowly pushed into the bone. My nurse was wonderful and made sure that I felt no pain. It was so strange. Pressure. Lots of pressure. Eventually, she had gotten deep enough, and warned me that I might feel some pain as she pulled the core of bone out. I didn't feel a thing. I asked to see it, and they put the dish near my face. An inch long tube of bloody bone. All done.
Pressure was applied to the tiny incision above my rump, and then we were on our way to the next appointment, which was with my transplant coordinator, Gayle. We went over a tentative time line (tentative because we're waiting on the financial aspects to go through) and if my evaluations look good and my financial whatnots fall into place, I'll be back at the BMT this Thursday for my consent conference. It's my understanding that at this meeting I will sit down with all of my doctors and transplant team and go over everything that they'll be doing to me. The point is not only to make sure I understand the risks involved in what I'm about to go through, but it's the time for me to ask any and all questions I may have before the ball starts rolling. Before I sign the paperwork, we have to be sure that we're all on the same page with the whole "kill me and bring me back to life" thing.
The second day of evaluations, on Friday, was a bit more low-key. Chest x-ray, panoramic head x-ray, EKG, breathing tests. Also, I got this heart scan where they inject you with a drug that binds to your red blood cells, then they inject you with a radioactive isotope (if I had a quarter for each time I'd been injected with radioactivity...) which binds with the previous drug and allows the scanning machine to monitor your heart function by seeing perfectly the flow of blood through your heart. Super cool, really. Also, pretty much a painless test, if you're as used to IVs like I am. The scan took an hour, but I meditated and it felt like no time at all.
***
When I began writing this post yesterday, this was the part where I talk about starting the process that we would be starting next Friday. According to our tentative schedule, Friday is when the catheter would be surgically inserted into my chest and I would begin receiving injections to stimulate the white blood cell growth in my bone marrow. However, we are officially at a stand still. I was at SRS yesterday, and my case worker not only refused to see me to help me fill out the last of my paperwork, but seemed very annoyed that I had even shown up to speak with her. She informed me that I would have to make an appointment for later this week or next week. I informed her that I did not have that kind of time. That I need to start a life-saving procedure on Thursday. She didn't hear me. Or maybe she didn't care. She said there is no way to speed up the process, that it can take up to six weeks. She seemed so very annoyed that I would need to expedite the process to stay alive. I finally asked her if there was an expedited process for a person, such as myself, who had the crushing task of checking the box on the form that said "illness will result in death." She said there was no way to rush it. I put the phone back in it's cradle and held back tears. I could hear people talking to each other, see children running around, I smelled cigarette smoke but sat numb, stupefied. I felt like she had just handed me a death sentence. After everything that I had been through, it was because of one case worker that I could lose it all.
I was able to keep it together as I walked to the reception desk and asked for an envelope to drop my paperwork off in. The receptionist (who had been very kind and helpful, despite how hard her days must be, greeting the poverty stricken masses at SRS) asked me if we had gotten everything worked out. I lost it. I started sobbing right there. I left the envelope and walked out the door into blue skies. I sat in my car for a long time and let myself cry.
Gayle called this morning and told me that we can go ahead with the consent conference, but the rest of my treatment is on hold because of the financial issues. The doctor said that if we don't start the stem cell transplant in a week, I have to go back to St Francis for more chemo, so we don't lose what we've already gained. My financial coordinator, Belinda, said that she'll be speaking with the supervisor at SRS today. According to other sources, there is a way to expedite a case when the person is dying and needs treatment. We'll see. At this point, I'm just waiting. I'm trying to stay positive.
I'm getting scared. But I know that everything will happen the way it's supposed to. And goddamnit, I'm not giving up now. Not after fighting this hard for this long. I keep thinking of all of the people who are rallying behind me, supporting me. Donating their money, their time, praying, sending their positive thoughts. They give me faith in myself. They keep me fighting.
Thank you for fighting with me. This isn't over yet.
On Thursday, bright and early, I was at the KU Med BMT (bone marrow transplant) Clinic. The first day of two days of evaluations. First were labs. Carlos, my friendly phlebotomist, grabbed a handful of 10 or 12 vials, a small plastic cup and a long swab. First try, he hit the invisible little vein in my left arm like a pro (poor guy didn't have much of a choice for placement. Right hand is blown, right arm is used up at this point.) Next, he informed me as to what the cup and swab were for. I'll go ahead and let you figure that one out on your own.
Next, I had my bone marrow biopsy. With a little help from Ativan and meditation, I layed calmly on my stomach as the nurse felt the back of my pelvic bone for the right spot. Then she numbed me with lidocaine. A lot of lidocaine. First the skin, then the deeper tissue, then the area around the bone. Once I was numbed up, she inserted a large needle into my pelvic bone. I was kept awake for this procedure so at this point, I could tell her if she was hitting a nerve. I would inform her of any discomfort, and she would stop and numb me up some more. (The numbing itself was an interesting sensation. Little taptaptaptaps on my bone. No real pain. It kind of tickled. Very strange.) Eventually, she had the needle deep enough into the bone to find a decent pocket of marrow. This is the part of the procedure where the pain can't generally be controlled. The feeling of having your bone marrow sucked out is like none other. It was painful, yes. But short lived. I had a lovely nurse holding my hand and looking into my eyes. She reminded me: "Breathe." I pushed out the breath I had just sucked in and slowly filled my lungs again. One more pull on her syringe, One more short bout of pain, and that part was over. They brought the tube to my face so I could see what bone marrow looked like. A dark, thick red. Pretty cool. Next was the actual biopsy. Another, larger needle was inserted, and slowly pushed into the bone. My nurse was wonderful and made sure that I felt no pain. It was so strange. Pressure. Lots of pressure. Eventually, she had gotten deep enough, and warned me that I might feel some pain as she pulled the core of bone out. I didn't feel a thing. I asked to see it, and they put the dish near my face. An inch long tube of bloody bone. All done.
Pressure was applied to the tiny incision above my rump, and then we were on our way to the next appointment, which was with my transplant coordinator, Gayle. We went over a tentative time line (tentative because we're waiting on the financial aspects to go through) and if my evaluations look good and my financial whatnots fall into place, I'll be back at the BMT this Thursday for my consent conference. It's my understanding that at this meeting I will sit down with all of my doctors and transplant team and go over everything that they'll be doing to me. The point is not only to make sure I understand the risks involved in what I'm about to go through, but it's the time for me to ask any and all questions I may have before the ball starts rolling. Before I sign the paperwork, we have to be sure that we're all on the same page with the whole "kill me and bring me back to life" thing.
The second day of evaluations, on Friday, was a bit more low-key. Chest x-ray, panoramic head x-ray, EKG, breathing tests. Also, I got this heart scan where they inject you with a drug that binds to your red blood cells, then they inject you with a radioactive isotope (if I had a quarter for each time I'd been injected with radioactivity...) which binds with the previous drug and allows the scanning machine to monitor your heart function by seeing perfectly the flow of blood through your heart. Super cool, really. Also, pretty much a painless test, if you're as used to IVs like I am. The scan took an hour, but I meditated and it felt like no time at all.
***
When I began writing this post yesterday, this was the part where I talk about starting the process that we would be starting next Friday. According to our tentative schedule, Friday is when the catheter would be surgically inserted into my chest and I would begin receiving injections to stimulate the white blood cell growth in my bone marrow. However, we are officially at a stand still. I was at SRS yesterday, and my case worker not only refused to see me to help me fill out the last of my paperwork, but seemed very annoyed that I had even shown up to speak with her. She informed me that I would have to make an appointment for later this week or next week. I informed her that I did not have that kind of time. That I need to start a life-saving procedure on Thursday. She didn't hear me. Or maybe she didn't care. She said there is no way to speed up the process, that it can take up to six weeks. She seemed so very annoyed that I would need to expedite the process to stay alive. I finally asked her if there was an expedited process for a person, such as myself, who had the crushing task of checking the box on the form that said "illness will result in death." She said there was no way to rush it. I put the phone back in it's cradle and held back tears. I could hear people talking to each other, see children running around, I smelled cigarette smoke but sat numb, stupefied. I felt like she had just handed me a death sentence. After everything that I had been through, it was because of one case worker that I could lose it all.
I was able to keep it together as I walked to the reception desk and asked for an envelope to drop my paperwork off in. The receptionist (who had been very kind and helpful, despite how hard her days must be, greeting the poverty stricken masses at SRS) asked me if we had gotten everything worked out. I lost it. I started sobbing right there. I left the envelope and walked out the door into blue skies. I sat in my car for a long time and let myself cry.
Gayle called this morning and told me that we can go ahead with the consent conference, but the rest of my treatment is on hold because of the financial issues. The doctor said that if we don't start the stem cell transplant in a week, I have to go back to St Francis for more chemo, so we don't lose what we've already gained. My financial coordinator, Belinda, said that she'll be speaking with the supervisor at SRS today. According to other sources, there is a way to expedite a case when the person is dying and needs treatment. We'll see. At this point, I'm just waiting. I'm trying to stay positive.
I'm getting scared. But I know that everything will happen the way it's supposed to. And goddamnit, I'm not giving up now. Not after fighting this hard for this long. I keep thinking of all of the people who are rallying behind me, supporting me. Donating their money, their time, praying, sending their positive thoughts. They give me faith in myself. They keep me fighting.
Thank you for fighting with me. This isn't over yet.
Monday, February 7, 2011
The PET scan results are in...
I had my scan this morning to see how I had responded to the ICE chemo.
The chemo worked. Compared to the pre-treatment scan from a month ago, almost nothing lit up in the one from this morning. The tumors where virtually gone. Melted away. This sort of response to treatment is a very good indicator that I will respond just as well to the transplant.
I left the hospital with tears streaming down my cheeks and a huge grin across my face. I'm so happy. This is such good news. What a beautiful day.
The next step is to start scheduling appointments for the evaluations, paperwork, consults and the consent conference. Then, the catheter will be placed, and they'll start pumping me full of Neupogen to make my white blood cell count skyrocket. The beginning of the transplant process.
So let's do this. Destroy me, and I promise I will come back stronger. Everyone, my friends, my family, my clientele from work, even complete strangers, have shown me so much love that I have nothing but hope in my heart. They make me ready to fight again. They remind me just how many people are rooting for me. Thinking of them will get me through the pain and sickness and darkness and give me the strength I need to get through this.
Sometimes I feel like I'm the luckiest girl in the world. I feel like I'm understanding things that I never could have grasped if this whole experience hadn't happened.
The road's about to get very rough. But I think I'm as ready as I'll ever be.
I'll just take it one day at a time.
The chemo worked. Compared to the pre-treatment scan from a month ago, almost nothing lit up in the one from this morning. The tumors where virtually gone. Melted away. This sort of response to treatment is a very good indicator that I will respond just as well to the transplant.
I left the hospital with tears streaming down my cheeks and a huge grin across my face. I'm so happy. This is such good news. What a beautiful day.
The next step is to start scheduling appointments for the evaluations, paperwork, consults and the consent conference. Then, the catheter will be placed, and they'll start pumping me full of Neupogen to make my white blood cell count skyrocket. The beginning of the transplant process.
So let's do this. Destroy me, and I promise I will come back stronger. Everyone, my friends, my family, my clientele from work, even complete strangers, have shown me so much love that I have nothing but hope in my heart. They make me ready to fight again. They remind me just how many people are rooting for me. Thinking of them will get me through the pain and sickness and darkness and give me the strength I need to get through this.
Sometimes I feel like I'm the luckiest girl in the world. I feel like I'm understanding things that I never could have grasped if this whole experience hadn't happened.
The road's about to get very rough. But I think I'm as ready as I'll ever be.
I'll just take it one day at a time.
Thursday, February 3, 2011
Breathe in, breathe out. Repeat.
Zen meditation helped so much. I need to start doing that every week, every day. I feel much better already. We spoke of mindfulness. We meditated. We chanted the Heart Sutra among other things. That sutra in particular always brings me such peace. Everything about that hour this evening felt right.
All things are merely concepts. We create our world.
Something to think about.
...gate gate paragate...
All things are merely concepts. We create our world.
Something to think about.
...gate gate paragate...
The mind you are trying to contact has been temporarily disconnected...
My mind is still feeling so strange. I'm not feeling completely apathetic anymore, but my ability to have a linear thought still ebbs and flows. It's hard to think about anything for too long. Very scattered, disconnected. Recollection and remembering is nearly impossible. I miss my mind.
I keep coming back to the Vonnegut short story "Harrison Burgeron." Short story shorter, there are these contraptions some of the characters are forced to wear on their heads. At regular intervals there's a loud noise that breaks their concentration so they can't think about anything for too long. It's like that, sans noise.
One thing that this mindset might be perfect for is some zen meditation. I'll be doing that with a friend tonight. Maybe it will help.
I keep coming back to the Vonnegut short story "Harrison Burgeron." Short story shorter, there are these contraptions some of the characters are forced to wear on their heads. At regular intervals there's a loud noise that breaks their concentration so they can't think about anything for too long. It's like that, sans noise.
One thing that this mindset might be perfect for is some zen meditation. I'll be doing that with a friend tonight. Maybe it will help.
Safety Mode
As may be evidenced by my recent lack of updates, my mind has been a mess this week. This evening has been the first time that I've actually been able to keep thoughts in my head long enough to type them into coherent sentences. It's been strange, to say the least. Beginning two days ago, I felt like a switch had been flipped in my mind. Like all of my judgment and emotion and empathy had simply been shut off. I contemplated whether I had reached some uncomfortable nirvana or was simply brain damaged. I just felt... numb. I figured maybe it was my mind's "safety mode." Like maybe everything, good and bad, had just finally gotten so heavy that my brain decided to shut down some crucial parts for a while. I don't know how to explain it, really. I'm just glad it's fading.
Physically, I'm weak, but not fatigued. I've taken to drinking TONS of water. I like to think it helps flush everything out. Couldn't hurt, right?
When I'm not "taking it easy" (forcing myself to lay around and drink more copious amounts of water) I've been hanging out with friends and enjoying the sunshine. And the snow. I've enjoyed that, too. It's all lovely. At this point, I'm just waiting. And trying not to think about the waiting. I have my PET scan on Monday, and I just want so so so bad for that scan to be good news. Worst case scenario, it shows tumor enlargement and that the chemo has had no effect. I have decided that it will be quite the opposite, and I will have responded beautifully, no need for any more ICE, and we can move on to the transplant.
Hmmm. Either way, the next few weeks will be rough.
I will write more tomorrow, promise. My mind will hopefully be feeling even better. Ever the optimist. Until then, I leave you with a quote that I think is both apropos and awfully neat:
"Every season is likeable, and wet days and fine, red wine and white, company and solitude. Even sleep, that deplorable curtailment of the joy of life, can be full of dreams; and the most common actions—a walk, a talk, solitude in one’s own orchard—can be enhanced and lit up by the association of the mind. Beauty is everywhere, and beauty is only two finger’s-breadth from goodness. So, in the name of health and sanity, let us not dwell on the end of the journey."
-Virginia Woolf
Physically, I'm weak, but not fatigued. I've taken to drinking TONS of water. I like to think it helps flush everything out. Couldn't hurt, right?
When I'm not "taking it easy" (forcing myself to lay around and drink more copious amounts of water) I've been hanging out with friends and enjoying the sunshine. And the snow. I've enjoyed that, too. It's all lovely. At this point, I'm just waiting. And trying not to think about the waiting. I have my PET scan on Monday, and I just want so so so bad for that scan to be good news. Worst case scenario, it shows tumor enlargement and that the chemo has had no effect. I have decided that it will be quite the opposite, and I will have responded beautifully, no need for any more ICE, and we can move on to the transplant.
Hmmm. Either way, the next few weeks will be rough.
I will write more tomorrow, promise. My mind will hopefully be feeling even better. Ever the optimist. Until then, I leave you with a quote that I think is both apropos and awfully neat:
"Every season is likeable, and wet days and fine, red wine and white, company and solitude. Even sleep, that deplorable curtailment of the joy of life, can be full of dreams; and the most common actions—a walk, a talk, solitude in one’s own orchard—can be enhanced and lit up by the association of the mind. Beauty is everywhere, and beauty is only two finger’s-breadth from goodness. So, in the name of health and sanity, let us not dwell on the end of the journey."
-Virginia Woolf
Friday, January 28, 2011
Wednesday, January 26, 2011
ICE 3/3, Round two
Very tired and nauseated. Sad. Breathing. I just want to sleep all of this away.
One day at a time, Sara.
One day at a time, Sara.
Monday, January 24, 2011
ICE 1/3, Round two. FIGHT!
And here I am again; sitting in this chair, watching late January shine through the window in my little corner of the Cancer Center. Today is the beginning of my second cycle of ICE chemo. In a perfect world, I will have achieved remission after this round according to my upcoming PET scan, and we can stop with this ICE stuff and move on to the heavy artillery.
As for my hair, the bulk of it came out in wet clumps in the shower on Saturday. That, combined with the fact that it was covering the collar of every shirt I would wear, poking my neck and driving me crazy, lead me to the conclusion that it had to go. My father and I had a lovely bonding experience as he buzzed my head for me.
In other news, I'm trying my damnedest to get my treatment financed, while simultaneously trying to distract myself from the reality of the next few months of my life. Music helps. Laughing helps. My amazing friends help. It's all beautiful. I keep hearing that in my head.
That's all for now, folks.
As for my hair, the bulk of it came out in wet clumps in the shower on Saturday. That, combined with the fact that it was covering the collar of every shirt I would wear, poking my neck and driving me crazy, lead me to the conclusion that it had to go. My father and I had a lovely bonding experience as he buzzed my head for me.
In other news, I'm trying my damnedest to get my treatment financed, while simultaneously trying to distract myself from the reality of the next few months of my life. Music helps. Laughing helps. My amazing friends help. It's all beautiful. I keep hearing that in my head.
That's all for now, folks.
Monday, January 17, 2011
It's like 10,000 spoons
I finally broke down and paid for a hair cut on Saturday.
...now my hair is coming out in clumps.
Isn't it ironic... don't ya think?
Time for the mohawk!
...now my hair is coming out in clumps.
Isn't it ironic... don't ya think?
Time for the mohawk!
good news...
My white blood cell counts are back up to normal levels!
This is excellent news on two levels. One, it means that I can go back to work and be in public places without worrying about suppressed immunity. Two, the Neulasta worked without excruciating pain! This will make life quite a bit better when they give me the huge doses of it for The Harvest next month.
Chemo countdown: one week. Then I have a PET scan to show how awesome I've responded to chemo on Feb. 7th. More news to come when I hear from KU med.
Now, off to pretend I'm normal for a little while longer.
This is excellent news on two levels. One, it means that I can go back to work and be in public places without worrying about suppressed immunity. Two, the Neulasta worked without excruciating pain! This will make life quite a bit better when they give me the huge doses of it for The Harvest next month.
Chemo countdown: one week. Then I have a PET scan to show how awesome I've responded to chemo on Feb. 7th. More news to come when I hear from KU med.
Now, off to pretend I'm normal for a little while longer.
Saturday, January 15, 2011
breathing
I've been feeling great. Physically. Mentally, kind of a mess. But all in all, doing very well.
I'm busy preparing. Buying comfy pants and low cut shirts, things that can be worn comfortably in hospitals all day, shirts that expose my port for access with infusions and whatnot.
As for my mind, I'm finding there is really no way to prepare, mentally. Aside from meditating, breathing, not living in fear, but realizing that everything is about to change, and that for a while, things will be really horrible. I know, in theory, that this will be the hardest thing I have ever done. The only way to prepare for that is to not freak out.
I'm off to find more drawstring pants.
I'm busy preparing. Buying comfy pants and low cut shirts, things that can be worn comfortably in hospitals all day, shirts that expose my port for access with infusions and whatnot.
As for my mind, I'm finding there is really no way to prepare, mentally. Aside from meditating, breathing, not living in fear, but realizing that everything is about to change, and that for a while, things will be really horrible. I know, in theory, that this will be the hardest thing I have ever done. The only way to prepare for that is to not freak out.
I'm off to find more drawstring pants.
Wednesday, January 12, 2011
The Nadir
I apologize for the lag in updates. I have been feeling so well that I picked up shifts at work yesterday and today. It's been so nice to get out of the house, off the couch. And heck, make a little money and see my friends, too.
I had blood work and an office visit today. I walked into my Onc's office, and he didn't even look up from my chart as he said, matter-of-factly: "Sara, your counts are shit." (I love my doctor. He's an ass.) What he meant was that my white blood cell count is very, very low. So, I've been instructed to start taking the Cipro they had me keep around in case of this sort of thing. (Cipro is short for Ciprofloxacin, a drug used to treat and prevent infections caused by bacteria. Powerful stuff.) I am to take it twice a day until Monday, when we will do more blood work to keep an eye on things.
What this means is that I have hit the "nadir" (the point of low white blood cell counts) with no debilitating pain from the Neulasta (so far)! I have been very achy today, and it's now getting a bit worse, but it's more annoying and uncomfortable than really painful. Was it the Claritin I've been taking for the last week? The preemptive Ibuprofen I've ingested? Maybe this Neulasta really is different. Needless to say, I'm very happy. This is pain I can deal with.
The rest of our conversation during the office visit covered our plan for the next few weeks. Monday the 17th: blood work, Monday the 24th: Blood work, and I begin the first of three days of my second cycle of ICE. Tuesday: ICE, Wednesday: ICE. Sometime the week after, blood work. Then, on February 7th I get a PET scan to see how I've responded. Moment of truth. From that point my Onc confers with KU Med as to the next step. If he doesn't like what he sees on the PET, that might mean a few more rounds of ICE. If the scan's looking good, we move on to the harvest. Man. That term is so dramatic, it needs to be capitalized and italicized. The Harvest. There we go. Dun dun duuuunnn.
Anyhoo. I'm feeling surprisingly well. Fatigued, definitely. Weak. Really feeling that achy bone pain now. But the nausea has passed. The chemo brain is manageable. Not bad, not bad at all.
Well, off to bed.
Oh, and Rock Chalk Jayhawk!
I had blood work and an office visit today. I walked into my Onc's office, and he didn't even look up from my chart as he said, matter-of-factly: "Sara, your counts are shit." (I love my doctor. He's an ass.) What he meant was that my white blood cell count is very, very low. So, I've been instructed to start taking the Cipro they had me keep around in case of this sort of thing. (Cipro is short for Ciprofloxacin, a drug used to treat and prevent infections caused by bacteria. Powerful stuff.) I am to take it twice a day until Monday, when we will do more blood work to keep an eye on things.
What this means is that I have hit the "nadir" (the point of low white blood cell counts) with no debilitating pain from the Neulasta (so far)! I have been very achy today, and it's now getting a bit worse, but it's more annoying and uncomfortable than really painful. Was it the Claritin I've been taking for the last week? The preemptive Ibuprofen I've ingested? Maybe this Neulasta really is different. Needless to say, I'm very happy. This is pain I can deal with.
The rest of our conversation during the office visit covered our plan for the next few weeks. Monday the 17th: blood work, Monday the 24th: Blood work, and I begin the first of three days of my second cycle of ICE. Tuesday: ICE, Wednesday: ICE. Sometime the week after, blood work. Then, on February 7th I get a PET scan to see how I've responded. Moment of truth. From that point my Onc confers with KU Med as to the next step. If he doesn't like what he sees on the PET, that might mean a few more rounds of ICE. If the scan's looking good, we move on to the harvest. Man. That term is so dramatic, it needs to be capitalized and italicized. The Harvest. There we go. Dun dun duuuunnn.
Anyhoo. I'm feeling surprisingly well. Fatigued, definitely. Weak. Really feeling that achy bone pain now. But the nausea has passed. The chemo brain is manageable. Not bad, not bad at all.
Well, off to bed.
Oh, and Rock Chalk Jayhawk!
Monday, January 10, 2011
I just read this:
"The agony of breaking through personal limitations is the agony of spiritual growth."
- Joseph Campbell, The Hero With a Thousand Faces
Love it.
- Joseph Campbell, The Hero With a Thousand Faces
Love it.
waiting for a miracle
I think I'm starting to feel the Neulasta injection. For real this time. I started getting the all-too-familiar pangs earlier in the evening. Very mild, but worrisome. I took two Ibuprofen and have had a heating pad on my pelvis non-stop; so far, the pain has backed off. I'm just scared that when I finally slip off to sleep, it will be like last time; waking up sobbing, in uncontrollable pain.
So, I guess I'm hoping for the best, and preparing for the possibility of a less than desirable outcome. I know that the last month has shown that I am sometimes stupidly optimistic, but frankly, I prefer living that way. I'd rather be stupidly optimistic than sitting, waiting, fretting, expecting the worst, becoming depressed and living in fear. If this disease has taught me anything, it's that I can't live like that. I won't live like that. That's not living.
Thinking positively, staying calm. Hoping, as always.
So, I guess I'm hoping for the best, and preparing for the possibility of a less than desirable outcome. I know that the last month has shown that I am sometimes stupidly optimistic, but frankly, I prefer living that way. I'd rather be stupidly optimistic than sitting, waiting, fretting, expecting the worst, becoming depressed and living in fear. If this disease has taught me anything, it's that I can't live like that. I won't live like that. That's not living.
Thinking positively, staying calm. Hoping, as always.
Saturday, January 8, 2011
Sara smile
Goodness. It's Saturday already? I'll catch up.
Thursday night was rough. I started getting a bit of a headache after ten, and by midnight, I had a full-on migraine. I'd never had one of those before. Good god. I lied on the couch barely able to move or speak for the next 7 hours. The time I spent in this state was punctuated only by using the restroom and vomiting. (Vomiting with a migraine. Very. VERY painful.) Marty slept on the couch next to me, and took care of me all night. I finally called mom around 7 am. Like the magical mom she is, she was suddenly there, holding me, massaging my head, bringing me water, telling me it would be okay. By noon, the pounding was down to a dull roar. I slipped in and out of consciousness for the rest of the day. I don't think I fully recovered until today.
Since then, I've been spending a lot of time on the couch. A bit of random pain, dizziness, fatigue and a LOT of nausea. It came to an apex today, but finally eased off this evening. Heck, I've eaten TWO meals today. That's kind of a big deal. Before, all I'd been able to get down was bread. I hesitate to think that it's uphill from here, but man, it's nice to dream.
Today was emotional for me. Up and down. Maybe it was all of the pain of the last few days combined with the seemingly unending nausea mixed with the fact that I've been stuck on a couch for most of the week, left to stew in my own thoughts.
I try to stay positive, but I'm only human. I think about death. About refractory situations. About impending infertility. About the path I'm about to go down next month. And I finally admit to myself- I'm scared. I'm so, so scared.
But it isn't about never being scared. It's about being scared as hell, and fighting anyway.
Thursday night was rough. I started getting a bit of a headache after ten, and by midnight, I had a full-on migraine. I'd never had one of those before. Good god. I lied on the couch barely able to move or speak for the next 7 hours. The time I spent in this state was punctuated only by using the restroom and vomiting. (Vomiting with a migraine. Very. VERY painful.) Marty slept on the couch next to me, and took care of me all night. I finally called mom around 7 am. Like the magical mom she is, she was suddenly there, holding me, massaging my head, bringing me water, telling me it would be okay. By noon, the pounding was down to a dull roar. I slipped in and out of consciousness for the rest of the day. I don't think I fully recovered until today.
Since then, I've been spending a lot of time on the couch. A bit of random pain, dizziness, fatigue and a LOT of nausea. It came to an apex today, but finally eased off this evening. Heck, I've eaten TWO meals today. That's kind of a big deal. Before, all I'd been able to get down was bread. I hesitate to think that it's uphill from here, but man, it's nice to dream.
Today was emotional for me. Up and down. Maybe it was all of the pain of the last few days combined with the seemingly unending nausea mixed with the fact that I've been stuck on a couch for most of the week, left to stew in my own thoughts.
I try to stay positive, but I'm only human. I think about death. About refractory situations. About impending infertility. About the path I'm about to go down next month. And I finally admit to myself- I'm scared. I'm so, so scared.
But it isn't about never being scared. It's about being scared as hell, and fighting anyway.
Thursday, January 6, 2011
the day after
I forgot how it feels. The numbness. And at the same time, heightened senses. I smell everything ten fold. Add nausea to the mix. Ugh.
I forgot about the pain. I remember last time, when I could feel the cancer dying. I could have sworn it hurt more... it was this horrible ache. At this point, I feel like I've been beaten up. I feel bruised and sore. On my face, along my jaw, my chest, clavicles, underarms, down my sides. I'm starting to feel pangs in my pelvis... is that the injection kicking in already?
It's hard to think straight. Please excuse my foggy, disconnected chemo-induced ramblings.
I had a follow up with the surgeon who did my biopsy. He said all of the seven nodes he removed were cancerous. He recommended that I start treatment. Ha. He was nice. He even sang me a song.
Okay, enough, I don't feel like I'm making sense.
I forgot about the pain. I remember last time, when I could feel the cancer dying. I could have sworn it hurt more... it was this horrible ache. At this point, I feel like I've been beaten up. I feel bruised and sore. On my face, along my jaw, my chest, clavicles, underarms, down my sides. I'm starting to feel pangs in my pelvis... is that the injection kicking in already?
It's hard to think straight. Please excuse my foggy, disconnected chemo-induced ramblings.
I had a follow up with the surgeon who did my biopsy. He said all of the seven nodes he removed were cancerous. He recommended that I start treatment. Ha. He was nice. He even sang me a song.
Okay, enough, I don't feel like I'm making sense.
Wednesday, January 5, 2011
3/3
Third day of ICE completed! Now for 18 glorious days of not sitting in a cancer center recliner for 8 hours a day. I did, however, get my Neulasta shot today. I am hoping that this time there won't be any excruciating pain. Hope hope hope.
So many friends came and visited me while I sat today. It was great, and really helped pass the time. I'm so lucky. I'm grateful and humbled. I don't know what I did to deserve these beautiful people that surround me. I love you all.
Anyhoo, I'm sleepy, nauseated, swollen with fluid, and glad to be at home on the couch, cat at my side. Although, I'm proud to say, I had enough energy when I got home to make a big ol' salmon dinner, complete with roasted new potatoes and salad with red onion and feta. I snarfed it down before the nausea hit. Score.
So far, so good.
So many friends came and visited me while I sat today. It was great, and really helped pass the time. I'm so lucky. I'm grateful and humbled. I don't know what I did to deserve these beautiful people that surround me. I love you all.
Anyhoo, I'm sleepy, nauseated, swollen with fluid, and glad to be at home on the couch, cat at my side. Although, I'm proud to say, I had enough energy when I got home to make a big ol' salmon dinner, complete with roasted new potatoes and salad with red onion and feta. I snarfed it down before the nausea hit. Score.
So far, so good.
Tuesday, January 4, 2011
2/3
There were a lot of things this afternoon that I thought about writing down. I really run the gamut of emotions in that chair.
I thought about writing about the sadness in my mother's face this morning. Some days it just gets to you. I understand that she wants to make her little girl better again, she wants to fix everything. I love her for that.
I thought about writing about the Vietnam vet that was in the chair next to me. He wanted to talk, and I never mind listening. I love a good story. Even if it's about getting spit on when he got back from the war. Even when it's about the VA hospital ignoring the cancer spreading across his forehead for five years. It was his second to last treatment today, and he was all smiles.
I thought about writing about the sun streaming into my corner of the cancer center today, watching it grow and change and fade as I sat from 9 in the morning to 4:30 in the evening. I got pretty restless today. That's a long time to be sitting, staring up at tubes and IV bags.
Buuut did I mention that I downloading Scrabble onto my Kindle? OH YEAH. Even when I'm stuck in that chair, life is good.
Life is good.
One more day of ICE to go and then 18 days of rest. Oh, and just one teeny Neulasta injection. That shouldn't kick in until Monday.
I thought about writing about the sadness in my mother's face this morning. Some days it just gets to you. I understand that she wants to make her little girl better again, she wants to fix everything. I love her for that.
I thought about writing about the Vietnam vet that was in the chair next to me. He wanted to talk, and I never mind listening. I love a good story. Even if it's about getting spit on when he got back from the war. Even when it's about the VA hospital ignoring the cancer spreading across his forehead for five years. It was his second to last treatment today, and he was all smiles.
I thought about writing about the sun streaming into my corner of the cancer center today, watching it grow and change and fade as I sat from 9 in the morning to 4:30 in the evening. I got pretty restless today. That's a long time to be sitting, staring up at tubes and IV bags.
Buuut did I mention that I downloading Scrabble onto my Kindle? OH YEAH. Even when I'm stuck in that chair, life is good.
Life is good.
One more day of ICE to go and then 18 days of rest. Oh, and just one teeny Neulasta injection. That shouldn't kick in until Monday.
Monday, January 3, 2011
1/3
It's a sunny day in the cancer center. Light streams in through large windows, colorful glass orbs hang from the ceiling peacefully.
And here I am, back in this chair. Sitting next to this noisy contraption, this IV pole on steroids. Bags of chemo chemicals, steroids, anti-emetics, saline dangling from metal hooks again. Needle in my chest again. Weight, temperature, blood pressure have been recorded. "Last name and date of birth?" I don't even pause anymore. "Sign here. And here. And here..." I sign and sign and sign and initial.
God, I'm back in this chair. I'm staying positive, I promise. It's just that this is such a strange place. The cancer center. Hope and loss coexist equally here. Sadness and sickness, faith and love. Fear of death and fighting for life, all of these things hang in the air. Some of us are dying here, some of us are living. All in one room.
I breath deeply. I smile. If I'm lucky, a bald headed warrior will walk by, and she'll smile back.
And here I am, back in this chair. Sitting next to this noisy contraption, this IV pole on steroids. Bags of chemo chemicals, steroids, anti-emetics, saline dangling from metal hooks again. Needle in my chest again. Weight, temperature, blood pressure have been recorded. "Last name and date of birth?" I don't even pause anymore. "Sign here. And here. And here..." I sign and sign and sign and initial.
God, I'm back in this chair. I'm staying positive, I promise. It's just that this is such a strange place. The cancer center. Hope and loss coexist equally here. Sadness and sickness, faith and love. Fear of death and fighting for life, all of these things hang in the air. Some of us are dying here, some of us are living. All in one room.
I breath deeply. I smile. If I'm lucky, a bald headed warrior will walk by, and she'll smile back.
ICE begins
Today is the day it begins again. I would be lying if I said I was ready. I would be lying if I said I wasn't scared.
So here goes day one of three days of eight-hour sittings.
I've got some fight left in me.
So here goes day one of three days of eight-hour sittings.
I've got some fight left in me.
Saturday, January 1, 2011
Lo! the bird is on the wing.
A new year, like a breath of fresh air. A new chance. A time to look back and appreciate how we've changed and who we've become, a time to look forward with hope.
Last year. Wow. I finished chemo. I went through radiation. A boy I loved died. I officiated one wedding, I was a bridesmaid in another, and I was asked to participate in one yet to come. Babies were conceived, babies were lost, babies were born. I began the year with a bald head, and ended it with a head of hot pink hair. I successfully finished a semester back in school, despite chemobrain and self-doubt. I feel more beautiful, more wise, tougher, stronger than I ever have before.
This next year will be the hardest and most rewarding year I have ever known. I welcome it with love and hope.
So here it is: my resolution for 2011 is to be in remission by my 25th birthday. And to live to see 2012.
If you have a glass, raise it. I propose a toast. To life. To the pursuit of bliss. To unconditional love, compassion and understanding. To smiling for no reason at all. To random acts of kindness. To faith in the human race. To faith in ourselves. To life. To living.
Last year. Wow. I finished chemo. I went through radiation. A boy I loved died. I officiated one wedding, I was a bridesmaid in another, and I was asked to participate in one yet to come. Babies were conceived, babies were lost, babies were born. I began the year with a bald head, and ended it with a head of hot pink hair. I successfully finished a semester back in school, despite chemobrain and self-doubt. I feel more beautiful, more wise, tougher, stronger than I ever have before.
This next year will be the hardest and most rewarding year I have ever known. I welcome it with love and hope.
So here it is: my resolution for 2011 is to be in remission by my 25th birthday. And to live to see 2012.
If you have a glass, raise it. I propose a toast. To life. To the pursuit of bliss. To unconditional love, compassion and understanding. To smiling for no reason at all. To random acts of kindness. To faith in the human race. To faith in ourselves. To life. To living.
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