Well, 6 days it was, I suppose.
A lot has happened in the past few days, so please forgive me for not writing. Haven't really felt up to it.
Wednesday I got a bone marrow biopsy.
Thursday I get a call from Onk. "You need to come in right away and we need to start another round of chemo. I don't want to wait until Monday." Thursday night I checked into a hotel room in the hospital. It was a small room and I can't say I was very fond of this room.
Friday I got a PICC line. It's similar to a blood spigot although this one is in my upper left arm instead of in my chest. My arm feels bruised and tender around the area of the PICC. Friday night I got my first round of chemo. This chemo is what they call MEC. Each letter stands for a different chemical that they use, but I don't know which one is which.
I get the first chemical around 8pm which lasts an hour. My second chemical comes immediately after at 9pm, lasting 6 hours until 3am. Then I get a 3 hour break and at 6am I get a bag of this very toxic looking cerulean blue chemical that only lasts for 10 or 20 minutes. The last one makes my urine turn green, which is a little weird.
Overall, the week has been pretty rough with some bright sides. My friend, Gator (the one who gave me the massive stuffed leukocyte) came up and spent the weekend. Kym and my mom have both been around a lot too.
I got moved to my old, much bigger room one of the days, but everything kid of blends together so it's hard to remember which day.
Nausea has been a problem the past few days, but we're working through it. I'm hoping now that the chemo is done, the nausea should simmer down a little bit. Last night was my last night of chemo this tim around.
Anyway, it's Thanksgiving so I should be thankful for something. I'm thankful that this is only one year. And I will have my good thanksgivings in my future.
Happy Thanksgiving everyone, from Bulwyf Broclergaard.
Thursday, November 24, 2011
Tuesday, November 15, 2011
Status Quo
Hi everybody!
Just wanted to let you know nothing has really been going on. I'm feeling pretty ok apart from these fevers from the fungal infection in my blood. I'm on an anti-fungal that I picked up from the pharmacy today, so we're good there.
Things are good. Keep rockin'.
Just wanted to let you know nothing has really been going on. I'm feeling pretty ok apart from these fevers from the fungal infection in my blood. I'm on an anti-fungal that I picked up from the pharmacy today, so we're good there.
Things are good. Keep rockin'.
Saturday, November 12, 2011
Day One of Freedom
Good day today at Kym's apartment. Though her and Bill were both working today, my mom and Jackie are both here to keep me company. We watched football and then I went for a walk. I'm still anemic, mind you, so I have to lie down every now and again just because I get a bit tired.
Walking was nice though because I didn't have to wear a mask. I could breathe normally and smell all the Fall Boston smells.
Walking was nice though because I didn't have to wear a mask. I could breathe normally and smell all the Fall Boston smells.
Friday, November 11, 2011
"Home. I'm Going Home."
Say that with a Russian accent and guess the movie.
But I just talked to Onk. The most recent bone marrow biopsy is.......
Inconclusive.
Sigh.
But Onk says it looks good, she went just short of saying I'm in remission. There are a few immature monocytes chillin' out in my marrow, but it's hard to tell if they're cancerous or not. Normally they stain for CD34, but apparently my cells are negative for CD34. That's mildly disturbing because CD34 is kind of a big deal in the body. I'm hoping she was just talking about these specific cells.
So the plan:
I'm heading to Kym's place tonight and will stay there until my outpatient appointments next week. I have a dental appointment at 10am on Monday and another bone marrow biopsy on Wednesday. Hopefully that will be conclusive enough to determine if I can go to Thanksgiving dinner and then get my transplant or get another round of chemo and spend another month in recovery. I'd really just like to know.
Curses.
But I just talked to Onk. The most recent bone marrow biopsy is.......
Inconclusive.
Sigh.
But Onk says it looks good, she went just short of saying I'm in remission. There are a few immature monocytes chillin' out in my marrow, but it's hard to tell if they're cancerous or not. Normally they stain for CD34, but apparently my cells are negative for CD34. That's mildly disturbing because CD34 is kind of a big deal in the body. I'm hoping she was just talking about these specific cells.
So the plan:
I'm heading to Kym's place tonight and will stay there until my outpatient appointments next week. I have a dental appointment at 10am on Monday and another bone marrow biopsy on Wednesday. Hopefully that will be conclusive enough to determine if I can go to Thanksgiving dinner and then get my transplant or get another round of chemo and spend another month in recovery. I'd really just like to know.
Curses.
Holding Pattern
Waiting on the results of the bone marrow biopsy. If it's clean, I could be discharged today. If it's not, I get 5 more days of chemo. The waiting game is a bit frustrating. I'll let you know when I know more, but as of right now I'm just waiting.
Thursday, November 10, 2011
Day Pass (again!)
Still waiting on the bone marrow biopsy result to see if I can actually be discharged. Until then, I just get to leave during the day.
Back later.
Back later.
A Note to Pill Makers
How hard is it to make an easily swallowable pill? During my stay here I have had very large pills and very small pills. Guess what. Those large pills weren't hard to swallow. They were shaped well and very easy to take.
Then there are those few who try to look cool for no good reason at all. Why do you need to shape your pill like a freaken almond? Just make it a circle. Or an oval. I feel like we've had pills for long enough, it should be pretty clear what pill shapes are easier to swallow than others. And it has nothing to do with size. I have to take massive potassium pills that go down like nothing. But I have to take these damned almond shaped antifungals for the next 4 months at least that, if I'm lucky, get caught in my throat on my first try. Usually it stops on my tongue and I have to drink more and try again, all the while the disgusting taste moves throughout my mouth.
Seriously. Whatever company decided it was a good idea to make a pill with pointy edges should be shut down by the FDA for being dumbasses.
Then there are those few who try to look cool for no good reason at all. Why do you need to shape your pill like a freaken almond? Just make it a circle. Or an oval. I feel like we've had pills for long enough, it should be pretty clear what pill shapes are easier to swallow than others. And it has nothing to do with size. I have to take massive potassium pills that go down like nothing. But I have to take these damned almond shaped antifungals for the next 4 months at least that, if I'm lucky, get caught in my throat on my first try. Usually it stops on my tongue and I have to drink more and try again, all the while the disgusting taste moves throughout my mouth.
Seriously. Whatever company decided it was a good idea to make a pill with pointy edges should be shut down by the FDA for being dumbasses.
My Day Out
I've gotten a lot of questions about my day out, so I'll give you all a little bit of an update. I'm hoping to leave again today, and if the bone marrow biopsy comes back negative, I could be discharged completely from the hospital and remain an outpatient for the next few weeks. I still have the transplant ahead, but I'd like to just get out of here at this point.
Yesterday was good though. It involved a lot of walking with Kym. I had to wear a mask and gloves, because although my white counts are up in the normal range, I'm what's called "functionally neutropenic." This means the numbers are all good, but I just had chemo and as much as I hate to admit it, I'm still more susceptible to infection than most people. But we left the hospital and walked around the Harvard Medical Quad (at least that's what I'm calling it). Kym's friend picked us up and took us back to her apartment. We then walked to a sandwich shop, and then the local library. I'll be here for a year so it will be good to know where the library is. I'll feel like I'm back in college again. Just take away the drinking and add medical safeguards and it's pretty much the same. No football games for me though.
After the library, we walked back to her apartment and Bill came home. Bill made a tasty fish dinner. It was tasty and good. We watched a bit of TV and then I headed back to the hospital. All in all I walked about 2.5 miles yesterday. This may not sound like a lot, but I'm still anemic and being in a hospital for the past month has severely de-conditioned me. I was pretty beat by the end of the day.
It was a good day. Very nice to breathe the outside air, even if it was through a mask.
Yesterday was good though. It involved a lot of walking with Kym. I had to wear a mask and gloves, because although my white counts are up in the normal range, I'm what's called "functionally neutropenic." This means the numbers are all good, but I just had chemo and as much as I hate to admit it, I'm still more susceptible to infection than most people. But we left the hospital and walked around the Harvard Medical Quad (at least that's what I'm calling it). Kym's friend picked us up and took us back to her apartment. We then walked to a sandwich shop, and then the local library. I'll be here for a year so it will be good to know where the library is. I'll feel like I'm back in college again. Just take away the drinking and add medical safeguards and it's pretty much the same. No football games for me though.
After the library, we walked back to her apartment and Bill came home. Bill made a tasty fish dinner. It was tasty and good. We watched a bit of TV and then I headed back to the hospital. All in all I walked about 2.5 miles yesterday. This may not sound like a lot, but I'm still anemic and being in a hospital for the past month has severely de-conditioned me. I was pretty beat by the end of the day.
It was a good day. Very nice to breathe the outside air, even if it was through a mask.
Wednesday, November 9, 2011
DAY PASS
The hospital is giving me a day pass. I'm allowed to leave for the day and be a normal person, I just need to be back here for sleep time. It's sweet because I get to go outside and walk around. This is because my counts are all doing well and I can fight disease with my own immune system for the time being.
Be back later.
Be back later.
Things Continue to Go Well
Fevers are down, drinking a delicious smoothie that Kym got for me. Other than that, not much to report. We're still waiting for the biopsy results, and until then I'm just in limbo, sitting here watching ESPN.
Tuesday, November 8, 2011
1776
I once heard that the original 21 gun salute was actually delivered in four volleys. 1, 7, 7, 6. Obviously the year of this country's birth. This was then consolidated to three volleys of 7. Either way it's done, you end up getting the number 21.
Well I hit my own 21 milestone today. This morning I was 21 pounds lighter than my average weight before entering the hospital. I've started eating bagels with cream cheese in the morning to try and gain that back. Hopefully that will make up for the week of not eating.
Well I hit my own 21 milestone today. This morning I was 21 pounds lighter than my average weight before entering the hospital. I've started eating bagels with cream cheese in the morning to try and gain that back. Hopefully that will make up for the week of not eating.
Monday, November 7, 2011
Feelin' Groovy
That 1 mg of ativan and .5 mg of oxycodone before my bone marrow biopsy may have been the best thing I've come up with since sliced bread. You all are familiar with the famous Simon and Garfunkel song, "59th Street Bridge Song" I'm sure. Well trust me when I say I'm feelin' groovy.
Bone Marrow Biopsy
Getting one in about 20 minutes. Why do I always get so stressed about these things?
Oh that's right. Because they stick a needle into my bone. What is that about?
Oh that's right. Because they stick a needle into my bone. What is that about?
Tower Free
Today will be a day long remembered. We have seen the end of my tower, we will soon see the end of cancerous little monocytes.
Also, it's very hard to write when every few minutes some doctor from some team comes in to check up on you. I know they're keeping me alive and stuff, but it will be nice to be out of the hospital for a little while. Whenever that is.
A lot was going on this weekend but I couldn't write about it because... well... a lot was going on. There were times when there were six (6) other non medical people in the room besides me for extended periods of time. It was a good weekend, but exhausting.
But now, I expect, you're looking for some answers. Last I left you, I was struggling through a 104.7 fever, then it broke momentarily like they eye of a hurricane. Hurricane Bulwyf. Then I talked about blood donations and ate some chicken.
So how did I get from barely making it to the bathroom to enjoying a plate of chicken? Well, it's a grand story. And it starts with the infectious disease doctors.
About a week ago, I was starting to spike high fevers, and one of my blood cultures came back positive for yeast. This was very bad news. It's not common, but it certainly happens. See, we all have yeast in our bowels, but normally they're kept at bay through normal competition with the other bacterial cultures all living in there. They all work well together, and work well with the body. Eating yogurt helps replenish those cultures which is why people recommend it for a healthy G.I. tract. What happened to me was chemo. Chemo destroys fast growing cells. This includes bastard monocytes, but also includes hair roots and your intestinal lining. Basically, my intestines are pretty chewed up, and the antibiotics I was on had decimated the competitive bacteria in my gut. The yeast, left with no competition, grew to great populations. This isn't a problem.
Unless you have a torn up intestinal tract and some of that yeast gets into your blood.
So there I was, lying on my bed. "Help, me, Docs! Help me!" I cried out. Their response was pretty decisive. Start me on some more intense IV antifungal, and remove my blood spigot. The yeast could stick to it.
So they take out the blood spigot, give me two temp IVs in my right arm, and start me on the new antifungal. But my temperatures keep rising. And I must say I've felt a lot of emotion throughout this whole experience thus far, but one emotion I had steered clear of pretty well was fear. I've never really felt scared ever. I have total confidence in my doctors, and when they say "this sucks but it's normal" I say "great, let's get through it." But the day I had the 104.7 fever. That day was different.
I wake up, and I feel absolutely terrible. My body aches, I'm cold but I'm not. The tech walks in to take vitals. She takes my temp. 104.7. "Whoa." She drops what she's doing and goes over to the door, yells across the pod to my nurse. The nurse is busy.
"Can this wait?"
"104.7!" She says nothing else.
"What?!"
"104.7!"
"Okay, I'll be right in!"
This was the first time I've felt this sense of urgency since my arrival to the hospital, and it was the first time I can say I was honestly worried. This wasn't normal. This sucked, but it wasn't part of the plan.
She gave me a larger dose of tylenol than normal right away and they kept monitoring me for a while after that. Fortunately the tylenol worked and my fever went down to a still manageable level. But we were still left with the question about where these fevers were coming from.
I should mention during this time I got a new rash on my leg. They biopsied it and found it to be a fungal rash of the same type found in my blood. It has since gone away after I've been taking my fancy new antifungal pills.
Well as it turns out, Onk noticed a pattern of my fever spikes. It soon became apparent to my attending team and the infectious diseases team. Their response? Take me completely off of IV antibiotics.
"WHAT?" You ask? "But you have no immune system!"
Good news everyone! My counts have begun to recover. I am no longer dangerously neutropenic and my doctors felt the antibiotics were now doing more harm than good. We dropped them completely, I now have no tower attachment, and my fever spikes went from 104, to 103, to 102, and yesterday I had no fevers during the waking hours at all. Last night, it hit 101, but we decided to forego the tylenol and let it take care of itself. It went away and all is good in the world.
Now, the only problem is that my body has a very hard time regulating my body temperature. So I've been sweating a lot at night requiring a few nightly sheet changes. I also need to change my shirt, so that's been excessively frustrating.
But it's better than 104.7.
I think most things are better than 104.7.
Also, it's very hard to write when every few minutes some doctor from some team comes in to check up on you. I know they're keeping me alive and stuff, but it will be nice to be out of the hospital for a little while. Whenever that is.
A lot was going on this weekend but I couldn't write about it because... well... a lot was going on. There were times when there were six (6) other non medical people in the room besides me for extended periods of time. It was a good weekend, but exhausting.
But now, I expect, you're looking for some answers. Last I left you, I was struggling through a 104.7 fever, then it broke momentarily like they eye of a hurricane. Hurricane Bulwyf. Then I talked about blood donations and ate some chicken.
So how did I get from barely making it to the bathroom to enjoying a plate of chicken? Well, it's a grand story. And it starts with the infectious disease doctors.
About a week ago, I was starting to spike high fevers, and one of my blood cultures came back positive for yeast. This was very bad news. It's not common, but it certainly happens. See, we all have yeast in our bowels, but normally they're kept at bay through normal competition with the other bacterial cultures all living in there. They all work well together, and work well with the body. Eating yogurt helps replenish those cultures which is why people recommend it for a healthy G.I. tract. What happened to me was chemo. Chemo destroys fast growing cells. This includes bastard monocytes, but also includes hair roots and your intestinal lining. Basically, my intestines are pretty chewed up, and the antibiotics I was on had decimated the competitive bacteria in my gut. The yeast, left with no competition, grew to great populations. This isn't a problem.
Unless you have a torn up intestinal tract and some of that yeast gets into your blood.
So there I was, lying on my bed. "Help, me, Docs! Help me!" I cried out. Their response was pretty decisive. Start me on some more intense IV antifungal, and remove my blood spigot. The yeast could stick to it.
So they take out the blood spigot, give me two temp IVs in my right arm, and start me on the new antifungal. But my temperatures keep rising. And I must say I've felt a lot of emotion throughout this whole experience thus far, but one emotion I had steered clear of pretty well was fear. I've never really felt scared ever. I have total confidence in my doctors, and when they say "this sucks but it's normal" I say "great, let's get through it." But the day I had the 104.7 fever. That day was different.
I wake up, and I feel absolutely terrible. My body aches, I'm cold but I'm not. The tech walks in to take vitals. She takes my temp. 104.7. "Whoa." She drops what she's doing and goes over to the door, yells across the pod to my nurse. The nurse is busy.
"Can this wait?"
"104.7!" She says nothing else.
"What?!"
"104.7!"
"Okay, I'll be right in!"
This was the first time I've felt this sense of urgency since my arrival to the hospital, and it was the first time I can say I was honestly worried. This wasn't normal. This sucked, but it wasn't part of the plan.
She gave me a larger dose of tylenol than normal right away and they kept monitoring me for a while after that. Fortunately the tylenol worked and my fever went down to a still manageable level. But we were still left with the question about where these fevers were coming from.
I should mention during this time I got a new rash on my leg. They biopsied it and found it to be a fungal rash of the same type found in my blood. It has since gone away after I've been taking my fancy new antifungal pills.
Well as it turns out, Onk noticed a pattern of my fever spikes. It soon became apparent to my attending team and the infectious diseases team. Their response? Take me completely off of IV antibiotics.
"WHAT?" You ask? "But you have no immune system!"
Good news everyone! My counts have begun to recover. I am no longer dangerously neutropenic and my doctors felt the antibiotics were now doing more harm than good. We dropped them completely, I now have no tower attachment, and my fever spikes went from 104, to 103, to 102, and yesterday I had no fevers during the waking hours at all. Last night, it hit 101, but we decided to forego the tylenol and let it take care of itself. It went away and all is good in the world.
Now, the only problem is that my body has a very hard time regulating my body temperature. So I've been sweating a lot at night requiring a few nightly sheet changes. I also need to change my shirt, so that's been excessively frustrating.
But it's better than 104.7.
I think most things are better than 104.7.
Saturday, November 5, 2011
Marsala vs Masala
Chicken prepared both ways is good, but I think I prefer in Indian version. With Saag, and over rice.
mmmmmm
Today was pretty busy and my fever went up to 102.5 at one point, but my platelets are up to 162 (in normal range!) so I got to ride my bike for 10 minutes and then I walked a mile and a half around the floor. Kym and Bill, Mom and Dad, and my cousin Kyym and her boyfriend were all here.
I had chicken marsala for dinner and it was very good.
mmmmmm
Today was pretty busy and my fever went up to 102.5 at one point, but my platelets are up to 162 (in normal range!) so I got to ride my bike for 10 minutes and then I walked a mile and a half around the floor. Kym and Bill, Mom and Dad, and my cousin Kyym and her boyfriend were all here.
I had chicken marsala for dinner and it was very good.
Thursday, November 3, 2011
A Note on Biological Donations.
Since getting sick, I've gotten a flood of offers from people offering blood, bone marrow, anything they can to help me out. Well, unfortunately you can't really donate blood for a specific person and the chances of you matching me out of the blue for bone marrow is pretty unreal (I thought we were playing halo...).
But the fact is I have gotten a lot of blood. I've gotten platelets, plasma, and eventually I'll get bone marrow too.
So I ask this of any of you serious about helping me with a donation. There is a website called Be The Match. I believe the way it works is that they'll send you a little package, you swab your cheek, and send it back in. You are now on the national marrow registry and if anyone out there matches you and needs marrow, you can donate your marrow (which consists of a 6 hour blood donation as they filter out the right cells. They won't actually stick a needle in your marrow like they do mine.
You can also donate:
Blood- Used to raise the hematocrit levels in very sick patients. Also helps restore blood loss from trauma damage. All you O- type out there will probably used for trauma because they don't have time to type the patient before giving them blood. But they'll probably save some for people like me because O- people can only use O- blood.
Plasma- Plasma's the stuff that your blood is without the red blood cells floating around. Plasma is actually a rich golden colour and you give it by donating blood, but then taking your cells back so they just keep the plasma. It's used to increase clotting factor in the blood. Clots (like scabs) are created by platelets, but they need certain chemicals called clotting factors in order to work properly. Which leads me to:
Platelets- Donating platelets is great because if people here get a platelet count below 10,000, they won't clot very effectively and need to get platelets. The normal range is 150,000 - 450,000.
Thank you for all your outreach and I really do appreciate the support, but trust me when I say I'm going to be fine. Finances are fine, insurance is fine, hospital care and post-hospital care are both covered as well. But there are people out there who do need this stuff, so if you are interested in helping me, please go donate. And if you don't have the time (trust me before I got sick I didn't think I'd have the time) you can still visit Be the Match, as is shouldn't take too much time and there are no needles involved.
Sincerely,
Bluwyf, Amadeus, Sarcophagus Broclergaard
But the fact is I have gotten a lot of blood. I've gotten platelets, plasma, and eventually I'll get bone marrow too.
So I ask this of any of you serious about helping me with a donation. There is a website called Be The Match. I believe the way it works is that they'll send you a little package, you swab your cheek, and send it back in. You are now on the national marrow registry and if anyone out there matches you and needs marrow, you can donate your marrow (which consists of a 6 hour blood donation as they filter out the right cells. They won't actually stick a needle in your marrow like they do mine.
You can also donate:
Blood- Used to raise the hematocrit levels in very sick patients. Also helps restore blood loss from trauma damage. All you O- type out there will probably used for trauma because they don't have time to type the patient before giving them blood. But they'll probably save some for people like me because O- people can only use O- blood.
Plasma- Plasma's the stuff that your blood is without the red blood cells floating around. Plasma is actually a rich golden colour and you give it by donating blood, but then taking your cells back so they just keep the plasma. It's used to increase clotting factor in the blood. Clots (like scabs) are created by platelets, but they need certain chemicals called clotting factors in order to work properly. Which leads me to:
Platelets- Donating platelets is great because if people here get a platelet count below 10,000, they won't clot very effectively and need to get platelets. The normal range is 150,000 - 450,000.
Thank you for all your outreach and I really do appreciate the support, but trust me when I say I'm going to be fine. Finances are fine, insurance is fine, hospital care and post-hospital care are both covered as well. But there are people out there who do need this stuff, so if you are interested in helping me, please go donate. And if you don't have the time (trust me before I got sick I didn't think I'd have the time) you can still visit Be the Match, as is shouldn't take too much time and there are no needles involved.
Sincerely,
Bluwyf, Amadeus, Sarcophagus Broclergaard
Labels:
be the match,
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Morning's Getting Better
After breaking the ridiculously high fever, I was able to go for a 1/2 mile walk and take a shower.
And I'm off fluids so right now I'm not tethered to anything!
All in all not too bad, considering.
And I'm off fluids so right now I'm not tethered to anything!
All in all not too bad, considering.
104.7
Man I am just trying to outdo myself. I with I could have that motivation for something constructive.
I woke up this morning with a 104.7 fever, and at first the blame was on the yeast in my blood, but now they're thinking it's probably a drug fever from one of my antibiotics, imipenem.
Hopefully they're right and I get switched and these fevers go away.
I woke up this morning with a 104.7 fever, and at first the blame was on the yeast in my blood, but now they're thinking it's probably a drug fever from one of my antibiotics, imipenem.
Hopefully they're right and I get switched and these fevers go away.
Tuesday, November 1, 2011
104.4
Is about where I peaked. This weekend was terrible and things still aren't going too well. But there is some good news. The doctors have isolated the cause as a blood yeast infection.
Ugh. That's frustrating. Yeast has a tendency to stick to things like.... blood spigots!
So the only way I get over this newest hurdle is by removing my blood spigot, treating with anti-fungals, producing negative blood cultures (no blossoming!) for two days and then getting my blood spigot put ba...
No!
I can't get another blood spigot that soon after taking one out, so they are going to put in what's called a "pick." This is basically a blood spigot in my arm instead of my chest. In the meantime, I'll have two peripheral IV's set up so I can still get different antibiotics and fluids.
I haven't gotten out of bed much and have gotten 3 pints on blood, but I felt good enough to write it in so I wrote it in.
End of story.
Ugh. That's frustrating. Yeast has a tendency to stick to things like.... blood spigots!
So the only way I get over this newest hurdle is by removing my blood spigot, treating with anti-fungals, producing negative blood cultures (no blossoming!) for two days and then getting my blood spigot put ba...
No!
I can't get another blood spigot that soon after taking one out, so they are going to put in what's called a "pick." This is basically a blood spigot in my arm instead of my chest. In the meantime, I'll have two peripheral IV's set up so I can still get different antibiotics and fluids.
I haven't gotten out of bed much and have gotten 3 pints on blood, but I felt good enough to write it in so I wrote it in.
End of story.
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