The concept of time when it comes to being in the hospital is a little complicated. I've been here for about 9 days now, but if I didn't have a calender, I would have no idea how much time I've actually spent here. The days of the week don't matter: every day is the same. Holidays don't matter...Thanksgiving, Xmas, etc. to me are just like any other day. To be honest, the period starting from the moment I step into this building to the moment I sign the discharge papers is just a big chunk of stationery time. This concept only applies to me personally, because the rest of the world does not stop with my clock or me. They continue forward. Let's say I'm here for 21 days this month, when I get out, I might as well have taken those 21 days and thrown them into a black hole. There's no making up for lost time, because the monotony exists only in my own head. When I get out, all I can hope for is to fit right back into that continuum that everyone else belongs to, even if it's just during a break from these four walls. Right now, life stands completely still for me, as if someone pressed pause on just my story, creating a sense of urgency to press play again and possibly fast forward so that I can catch up and go live again. I can't expect everyone else to rewind or also pause...so I guess all I can ask for now is the ability to just play again.
Just to clarify what a standard day consists of on the Oncology floor, I'm going to break it down for you hour by hour. You would think I would start at the beginning of the day, namely the morning, but the definition of a beginning and ending to a day is very unclear here and you'll see why:
12:00 am: I go back and forth on deciding which drug to take to sleep tonight. My absolute favorite is IV Benadryl - this is hands down the best kept secret in hospitals...I ask for 25 mg. It's the perfect little number and just enough to feel the initial and immediate high as it's injected directly into a central vein through my catheter and then the slow but effective drowsiness that follows. It's the same exact spinning feeling that you get from alcohol sometimes. I look forward to this all day and I plan out this moment very carefully so that I have already brushed my teeth and turned everything off to be ready to make the call to the night nurse and ask for this. It's pretty scary to have that freedom of being able to ask for any drug I want and have it injected into my bloodstream within minutes. Too bad I know better than to abuse this luxury...
1:00 am: I already have to pee. I'm usually on at least one bag of IV fluids and the pressure you feel from the sudden influx of fluids in your bladder cannot be ignored even under the influence of something as strong as ambien or IV Bena.
2:15 am: I wake up covered in sweat. Even my bare head is sweating. I throw the covers off in an attempt to cool down and exactly two minutes later, I'm cold again. Then I realize have to pee again. I try to ignore it for about 5 minutes or so, but that's about as long as I can hold it. After I go, I come back to bed and realize my drowsiness is already wearing off and I struggle to fall asleep again.
4:00 am: The tech for the night comes in and takes my vital signs. They also ask me to get up and out of bed to take my weight. Why at this hour? Who knows...I want to throw something at the little blood pressure machine that makes amazingly loud noises, but there's nothing close-by. I might as well go to the bathroom once more before collapsing back into bed.
5:00 am: Ahhh the lights are so bright. Who the hell is in my room? Oh yeah, it's 5am and that means they need to draw blood and send it down to the lab so that the results are back in time before the doctors get here. I hope the nurse does this fast and gets out, because the longer she takes to do this, the less chances I have of being able to fall back asleep and more likely that I'll make myself get up and go to the bathroom one more time.
6:00 am: The cleaning crew. They take out the trash, this is pretty loud. Sometimes I can ignore this, sometimes I can't.
7:00 am: The new nurse for the day comes in and announces her name. Completely unnecessary, but I probably would've woken up to pee by now anyways, so that's exactly what I do.
8:30 am: The food delivery girl comes in and gives me breakfast. I won't eat this until noon, but can't be mad at her for that.
9:00 am: The doctor that's rounding for the day comes in and tells me how my blood counts are. Even their visits are usually pointless, because I could just ask for my blood report from the nurse later in the day and they almost never tell me anything that I don't already know. Every conversation with them ends with the same conclusion: we don't know when you can go home, just be patient and wait. The only time I do like seeing the doctor is when it's the new, cute one. He's the youngest one out of all of them and to my benefit, he comes in very often :)
9:00 am - 12:00 pm: This is usually when I get the best sleep depending on whether my nurse leaves me alone or not. Most of them will come in around 9ish and leave my meds for the morning on the table and tell me to eat and take them and then don't return until about noon. These 3 hours are crucial in getting majority of my rest for the day.
12:00 pm - 5:00 pm - I eat twice during this time, take my medicines for the day, entertain visitors, and usually walk around on the floor here. Probably pee about 10-12 times depending on the rate at which the fluids are coming in.
6:00 pm - the nurse comes in to give me the neupogen shot, the purpose for which is to make my bone marrow produce healthy cells as fast as possible following chemo. Normally, when you get a shot, you feel the initial sting and then pretty quickly the solution soaks into your skin and you're done. Not neupogen. This is almost a gel-like liquid that burns a LOT when injected into your skin. It also leaves nasty bruises all over my stomach. I have no idea if those will ever go away. Also, depending on how good the nurse's technique is, the shot burns more or less. I usually ask them to do it as fast as possible, because the slower the injection, the longer the stinging lasts. I also ask them to make sure that the have had the shot out for a while so that it's at room temperature, because I have had cold neupogen before and holy good God, the pain is pretty nasty. This is given every day starting day 5 of each cycle and produces pretty intense side effects - pain in all of my joints, lower back and limbs. I can almost feel something being stimulated in my bones, a weird buzz, especially when I walk while being on this drug. The bone pain is so severe at times that it keeps me up at night and almost tempts me to ask for pain killers. Thankfully so far in this round, I have not used any and dealt with the pain by just trying to ignore it. I did feel like my knees were going to collapse when I was walking yesterday, but I think that's mainly from the two opposing forces at work right now: the chemotherapy which is killing the cells in my bone marrow and this neupogen, which is trying to make them grow back at an unnaturally high rate. Being pushed into overdrive like this has long term consequences for your bones which I'm afraid to even look into. I'll just have to deal with those as they come...the first concern is to make it through the transplant as everything else becomes a moot point without the success of that. So I take these shots like a champ. I also take the pain they bring like a champ, because that's basically a part of my genetic code. I'm pretty sure I have it written in my DNA - the ability to withstand intense amounts of pain and not turn into a crazy person going through multiple rounds of the messy and ugly phenomenon they call cancer treatment. More to come on that when I write about my next bone marrow biopsy HA.
7:00 pm - 12:00 am - I get the nightly meds and the nurse shift changes. I usually try to squeeze in a walk in here to try to be as tired as possible so that I can be exhausted by the time I try to sleep and succeed at that. Sometimes they have additional shots for me. For example, today they gave me a Zoladex shot which shuts down my ovaries in order to protect them from the harms of chemo. There's mixed evidence on how well it works, but it definitely stops ovulation. It's basically induces temporary menopause. The needle for this one is humongous. It feels like they're ripping through your stomach and usually bleeds for a while after. At least it's only once a month.
There you have it - a day in the life or as I would say, every day of my life for now. I always wonder why the receiving end of medical treatment is represented by the word patient...what a play on words. Whoever coined this term got it just right, unfortunately. Mistake are made every day in the medical field, and the patients are always the ones that lose and suffer as a result and since we are the diseased ones that need help in the first place, of course we are the ones who have to be "patient". That inherently makes sense and adds the much needed insult to injury.
Monday, November 21, 2011
Wednesday, November 16, 2011
Spinal Tap # 9
They take no time in knocking you down man. When I came in on Monday, I was running around, even working out a little bit, because I literally do everything in my power while I'm here to not lose strength. Whatever you lose, you have to rebuild and that takes a lot of time and effort. Mon and Tues were good then (minus the disrupted sleep, but that's a given being here).
On Wed, I had a spinal tap which is basically when they insert a needle into your spinal column to obtain a sample of the spinal fluid to check and make sure that the disease has not crossed that barrier. Thank god, so far, that test has always been negative for me. It would've been very messy otherwise, involving chemo treatments to spinal column, which they gave me as a preventative measure anyway every time they have done a spinal tap. They usually put in Methotrexate in my spine, so same thing was done yesterday. If everything goes well from now on, I think this might just have been the last spinal tap procedure....(but that's also what I thought two years ago and was clearly wrong, so I guess of all the people in this world, a cancer patient should really never say never.)
The procedure itself is probably about 20-30 minutes, depending on how slow/fast the doctor is. I had a pretty slow one yesterday, but his technique wasn't bad. That's what it all comes down to with things like these - if they don't do it right, they're probably gonna have to do it again...the last thing you want is to be getting that needle jammed into your spine twice. It's not a little poke either, they go all the way into the center of your spine:
http://www.headache-treatment-options.com/spinal-headache.html
You have to lay on your stomach, the doctor rubs some beta-dine in your back, inserts a little needle with the numbing medicine, and then finally the actual needle that collects the sample and is also used to put in chemo with. That needle stays in for about 10 minutes or so (unless if the doctor is fast) and he sort of pushes it deeper into the spinal canal until he finds a good spot and then we pretty much stay there. I'm usually sweating a lot by this time due to the combination of pain, nerves and anticipation of the moment they'll take the damn thing out. A lot of doctors try to make conversation when doing this to make the patient feel better, which recently started working for me, but the first 4-5 of these, I didn't feel like talking during it. It was actually pretty annoying, because I felt like he was trying so hard to distract me, when I preferred to focus on the pain for some odd reason. The change in that outlook probably came from the fact that I'm a pro at these by now. I mean you have 9 of these and even the pain is not so scary anymore.
After he takes out the spinal fluid, he puts in the chemo fluids and we're done. They tell me I have to lay flat on my back for about 8 hours or so, or as long as possible, or else I would get nasty headaches from the disruption of the spinal fluid created by the entrance of the needle and the removal of some of the fluid itself. I've had these during the first round of treatment, but not because I couldn't lay flat for that long, but because I had to get up and pee. They have you on so much fluid that the longest you can ever hold it is about 1.5 hours. Even that takes a lot of patience. Also, it's bad for your kidneys while on chemo to not pee often. There's always that trade-off on the spinal tap days and you kinda just hope you get lucky and don't get the headache from hell because you got up to pee.
The absolute worst part of going down to the Radiology area to get this procedure done is seeing little kids, even little babies being brought into one of those rooms and screaming in pain...I don't know how those parents see their kids go through it. Breaks my heart every time.
On Wed, I had a spinal tap which is basically when they insert a needle into your spinal column to obtain a sample of the spinal fluid to check and make sure that the disease has not crossed that barrier. Thank god, so far, that test has always been negative for me. It would've been very messy otherwise, involving chemo treatments to spinal column, which they gave me as a preventative measure anyway every time they have done a spinal tap. They usually put in Methotrexate in my spine, so same thing was done yesterday. If everything goes well from now on, I think this might just have been the last spinal tap procedure....(but that's also what I thought two years ago and was clearly wrong, so I guess of all the people in this world, a cancer patient should really never say never.)
The procedure itself is probably about 20-30 minutes, depending on how slow/fast the doctor is. I had a pretty slow one yesterday, but his technique wasn't bad. That's what it all comes down to with things like these - if they don't do it right, they're probably gonna have to do it again...the last thing you want is to be getting that needle jammed into your spine twice. It's not a little poke either, they go all the way into the center of your spine:
http://www.headache-treatment-options.com/spinal-headache.html
You have to lay on your stomach, the doctor rubs some beta-dine in your back, inserts a little needle with the numbing medicine, and then finally the actual needle that collects the sample and is also used to put in chemo with. That needle stays in for about 10 minutes or so (unless if the doctor is fast) and he sort of pushes it deeper into the spinal canal until he finds a good spot and then we pretty much stay there. I'm usually sweating a lot by this time due to the combination of pain, nerves and anticipation of the moment they'll take the damn thing out. A lot of doctors try to make conversation when doing this to make the patient feel better, which recently started working for me, but the first 4-5 of these, I didn't feel like talking during it. It was actually pretty annoying, because I felt like he was trying so hard to distract me, when I preferred to focus on the pain for some odd reason. The change in that outlook probably came from the fact that I'm a pro at these by now. I mean you have 9 of these and even the pain is not so scary anymore.
After he takes out the spinal fluid, he puts in the chemo fluids and we're done. They tell me I have to lay flat on my back for about 8 hours or so, or as long as possible, or else I would get nasty headaches from the disruption of the spinal fluid created by the entrance of the needle and the removal of some of the fluid itself. I've had these during the first round of treatment, but not because I couldn't lay flat for that long, but because I had to get up and pee. They have you on so much fluid that the longest you can ever hold it is about 1.5 hours. Even that takes a lot of patience. Also, it's bad for your kidneys while on chemo to not pee often. There's always that trade-off on the spinal tap days and you kinda just hope you get lucky and don't get the headache from hell because you got up to pee.
The absolute worst part of going down to the Radiology area to get this procedure done is seeing little kids, even little babies being brought into one of those rooms and screaming in pain...I don't know how those parents see their kids go through it. Breaks my heart every time.
Monday, November 14, 2011
Back to Work
I remember driving by the hospital a few times after I got out in April 2010 and it gave me chills to look up at this oncology building that I had spent so many months at and almost didn't make it out of. Every time I drove by, I would say to myself "thank god all that is behind me" and didn't ever proceed to consider the possibility of ending up here again, because it was that scary. I thought I had paid my dues. Those moments feel like a distant memory now that I'm back here again for quite some time...
I"m doing another round of chemo at Inova Fairfax (same thing I did here last month) before going in for the Bone Marrow Transplant (BMT). I'll be here for about 3-4 weeks, then get about 2 weeks off and sometime around the end of december, we'll start at Hopkins. I'll post on here as much as I can while I'm here and when the transplant starts to provide updates so that I don't have to repeat the same story over and over again.
A typical chemo cycle starts with about two weeks of IV infusions during the day and night. One of the drugs that I'm on right now is infused for 7 days continuously, 24/7. The other 3 are all about 3-4 hour infusions, given twice a day until the end of the second week. This means that after the end of week two, I'm done receiving all the chemo and waiting for my body to process everything and hit the low (the point at which chemo has killed almost all of my blood cells) so that I can bounce back up to normal blood counts over weeks 3 and 4. This is just a general timeline; it often takes a little bit more or little bit less time for this cycle to complete. In addition to the chemo fluids, I'm on normal saline and sodium bicarbonate, which helps protect my kidneys against damage from the toxicity of the chemo. Basically, I have to pee at least every hour, if not more often.
At some point during week 2, they start giving me neupogen shots that basically force my bone marrow to start producing cells again (hopefully all normal and no blasts) at an unnaturally high speed. Normally this process takes months, but they make my bones jump into overdrive mode and produce in just a couple weeks the amount of work it would normally take months to produce. I pay my bones for this overtime work by withstanding the pain that they cause during this process. There are also long term consequences of overworking your bones like that: it makes them weaker. Especially if you repeat these chemo cycles over and over again as I have and for two rounds of leukemia treatment. During the break time, (the time before relapse and after the first treatment in 09-10) I think I did a good amount of work in trying to make my bones strong again and reversing the damage, but I feel like no matter how hard I work, the same degree of strength is impossible to achieve. I'll get closer and closer over time, depending on how hard I work at it, but I remember how my body used to feel before all this very clearly - it was amazing, incomparable to the condition I'm in now. Once the foundation is weakened (like it was during the time of critical illness last year,) a builder can only do so much when constructing the rest of the house.
Anyway, as soon as my blood counts come back up, they let me go home. This time I'll have about two weeks off before I go to Hopkins to do the transplant. Can't. Wait.
SIKE.
I"m doing another round of chemo at Inova Fairfax (same thing I did here last month) before going in for the Bone Marrow Transplant (BMT). I'll be here for about 3-4 weeks, then get about 2 weeks off and sometime around the end of december, we'll start at Hopkins. I'll post on here as much as I can while I'm here and when the transplant starts to provide updates so that I don't have to repeat the same story over and over again.
A typical chemo cycle starts with about two weeks of IV infusions during the day and night. One of the drugs that I'm on right now is infused for 7 days continuously, 24/7. The other 3 are all about 3-4 hour infusions, given twice a day until the end of the second week. This means that after the end of week two, I'm done receiving all the chemo and waiting for my body to process everything and hit the low (the point at which chemo has killed almost all of my blood cells) so that I can bounce back up to normal blood counts over weeks 3 and 4. This is just a general timeline; it often takes a little bit more or little bit less time for this cycle to complete. In addition to the chemo fluids, I'm on normal saline and sodium bicarbonate, which helps protect my kidneys against damage from the toxicity of the chemo. Basically, I have to pee at least every hour, if not more often.
At some point during week 2, they start giving me neupogen shots that basically force my bone marrow to start producing cells again (hopefully all normal and no blasts) at an unnaturally high speed. Normally this process takes months, but they make my bones jump into overdrive mode and produce in just a couple weeks the amount of work it would normally take months to produce. I pay my bones for this overtime work by withstanding the pain that they cause during this process. There are also long term consequences of overworking your bones like that: it makes them weaker. Especially if you repeat these chemo cycles over and over again as I have and for two rounds of leukemia treatment. During the break time, (the time before relapse and after the first treatment in 09-10) I think I did a good amount of work in trying to make my bones strong again and reversing the damage, but I feel like no matter how hard I work, the same degree of strength is impossible to achieve. I'll get closer and closer over time, depending on how hard I work at it, but I remember how my body used to feel before all this very clearly - it was amazing, incomparable to the condition I'm in now. Once the foundation is weakened (like it was during the time of critical illness last year,) a builder can only do so much when constructing the rest of the house.
Anyway, as soon as my blood counts come back up, they let me go home. This time I'll have about two weeks off before I go to Hopkins to do the transplant. Can't. Wait.
SIKE.
New high-tech IV machines...also heavier and a pain in the ass when trying to walk around. They're def up there on my list of things that I never want to see again when I'm done.
Sunday, November 6, 2011
Let The Games Begin
First of all, let me explain the title...
The term "ALL Olympics" came to my mind when I was doing my daily laps in the hospital one day during the Oct 2011 chemo cycle. During these walks, I came up with numerous phrases and thoughts that I plan on writing down, and in terms of the title for this blog, this phrase popped up in my head when I thought about summarizing this experience concisely.
This is round 2. Never anticipated there being another round of the monstrosity that took place in 2010, but the mission now is to win it all. I'll consider the year in between the relapse and the first round as the training period. I worked as hard as I could to get as close as possible to my physical abilities before all this, and this will be the test of that effort. Can't come in second, I have to win the gold. That's the only option.
I came across this documentary recently of a bone marrow transplant (BMT) success story. I was so freaked out by how similar our experiences are...both diagnosed with ALL at age 22, needing a BMT and found an almost identical match from his sibling, etc. Not only that, but also the treatment that he was on was very similar to mine, and everyday events like getting a neupogen shot, getting lumbar punctures/spinal taps, etc. were also in this documentary. The way he described having panic attacks were word for word my thoughts. Exactly. It was so freaky how he experienced even similar hallucinations when he was on pain killers and critically ill.
I can only hope that my outcome will also be the same as his.
http://www.hulu.com/watch/288577/jacks-mannequin-dear-jack
The term "ALL Olympics" came to my mind when I was doing my daily laps in the hospital one day during the Oct 2011 chemo cycle. During these walks, I came up with numerous phrases and thoughts that I plan on writing down, and in terms of the title for this blog, this phrase popped up in my head when I thought about summarizing this experience concisely.
This is round 2. Never anticipated there being another round of the monstrosity that took place in 2010, but the mission now is to win it all. I'll consider the year in between the relapse and the first round as the training period. I worked as hard as I could to get as close as possible to my physical abilities before all this, and this will be the test of that effort. Can't come in second, I have to win the gold. That's the only option.
I came across this documentary recently of a bone marrow transplant (BMT) success story. I was so freaked out by how similar our experiences are...both diagnosed with ALL at age 22, needing a BMT and found an almost identical match from his sibling, etc. Not only that, but also the treatment that he was on was very similar to mine, and everyday events like getting a neupogen shot, getting lumbar punctures/spinal taps, etc. were also in this documentary. The way he described having panic attacks were word for word my thoughts. Exactly. It was so freaky how he experienced even similar hallucinations when he was on pain killers and critically ill.
I can only hope that my outcome will also be the same as his.
http://www.hulu.com/watch/288577/jacks-mannequin-dear-jack
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