Tuesday, July 29, 2014
CML - Day Six (Cancer Collage)
Every day, from the day I am diagnosed, Keith and I take a gopro picture to chronicle my hospital stay. And then he made me a collage. My cancer collage.
CML - Day Five
By day five of hospitalization, I am more than antsy. I am ready to go home. I want this thing out of my neck. I want to be able to take a shower. Wear a real bra. Sleep for more than 4 hours without having my vitals taken.
There are murmurs that my release is eminent, but my oncologist dispels those. He tells me to hang on for one more day. His amazing nursing staff are trying to arrange delivery of my very expensive medication, so that there is no dosage interruption when I am released. It actually hadn't occurred to me before now that I wouldn't be able to fill my prescription at the local Walgreen's. He also tells me that they are working on funding to assist with my med costs, as my insurance will only cover approximately 90%. So I'm doing some math, and get a flash of panic when I realize that without help from a foundation, my meds could cost me around $1000 a month. Which I could swing. For a month or two. But not indefinitely. Not for life. And since there currently is no cure for CML, I'm looking at a life sentence here. While I'm in the hospital, my medications are part of my treatment. Thank you to my doctor for truly having my best interests at heart.
Again, no leukapheresis today. I'm glad of it. I'm starting to go crazy being tied down. I'm wouldn't call myself a super active person, but I am used to walking at least half an hour a day, and the only thing that I've been able to do for the past 5 days is get up to go to the bathroom. One of my nurses clears it with my doctor, and I take a walking tour of the ward. It is not nearly large enough. I go all the way down the hallway to the elevators, which I look at longingly, and then back down the hallway to the large windows at the other end of the hall. It looks like summer outside. It was persistently cold when I was admitted to the hospital. I touch the tempered glass, and it's warm. One more walk up and down the ward. Keith wheels my pole, pulls the back of my gown closed, and makes sure that I don't collapse. It's nice to have someone covering your ass. In more ways than one.
So two days now without leukapherisis, and the nurse gets permission to pull out my catheter/line. I cannot wait. It's less painful than when it first went in, but I am so ready for it to be gone. If I could sleep on my right side again, it would feel like heaven. I get ready to have another procedure. It did not go in without a bit of fanfare, so imagine my surprise when she cuts the stitches holding it in place, and yanks it out with one big tug. And then tries to choke me.
Okay, no, so she was only holding pressure on my neck so that it did not bleed, but the pressure is pretty extreme. And I am so grateful that it is gone I can hardly stand it. It looks like I got bitten by a one fanged vampire, but I'm elated.
People are starting to get ready to get rid of me. If all goes according to plan, I'll be discharged tomorrow. I've already started to pack my things, which are few, but seem to be scattered about everywhere.
My nurse that night asks me if I have children. She obviously did not get the memo. I tell her that I do not, but that I do have a four year old niece. She stresses the importance of being very careful with my chemotherapy medication (Gleevec) and tells me that I must be careful not to expose children to any of my bodily fluids, especially urine or vomit. Specifically large amounts of urine or vomit. Um, excuse me? Why in the world is this something that she's telling me? Don't pee or puke on any kids. Um, check. Got it. I'll do my very best.
I wake up the next morning knowing that I need to stay calm. They won't release me until after I've had my meds, which usually come in around noon. I pick out clothes to wear. This is the first time that I'll be fully dressed since I came into the hospital. I wait for my WBC (white blood cell count to come back), and I'm down again to 242000. Hard to believe that I was twice that when I was admitted. My count has been coming down so slowly that I don't think I'll ever get to normal (between 4000-11000). But if they think I'm okay to go home, I'm certainly not going to fight them on that point. Look what such good care they've taken of me so far. (In all earnestness.)
After I get dosed, I can't help it anymore, and I get up to give myself my last washcloth bath. I can't do my shirt until they remove my ECG and iv, but I can put on underwear and pants. Except I can't. The clothes that I have chosen are not fitting. I am fat! Retaining so much water that my legs are painful. I feel like they don't bend right, like fatness is keeping them from fully bending at the knee. My hips are far wider than I'm accustomed to...and maybe it feels like I'm being shallow and petty about it, but the truth is that it's uncomfortable, bordering on painful. I lift up the little panel on my bed, and push the button that will take my weight. It's in the 160s. I'm retaining over 10lbs of water! But there is no way I'm mentioning this to anyone until they've signed my discharge papers. There is nothing that is going to keep me from getting out of the hospital today. So yoga pants it is.
It of course takes ages between the promise of discharge, and the actual discharge paperwork, prescription's, instructions, excetera. I've got my eye on the prize, though.
Keith shows up right on time, comes all the way in to get me, and then has to run out to bring the car up to the entrance to pick me up. My nurse tells me that she is supposed to wheel me in a wheelchair, but agrees to let me walk while she accompanies me.
The car pulls up to the curb, and as I slide in, I sigh with relief. I feel like the fight is over, but I suppose, really, its just beginning.
There are murmurs that my release is eminent, but my oncologist dispels those. He tells me to hang on for one more day. His amazing nursing staff are trying to arrange delivery of my very expensive medication, so that there is no dosage interruption when I am released. It actually hadn't occurred to me before now that I wouldn't be able to fill my prescription at the local Walgreen's. He also tells me that they are working on funding to assist with my med costs, as my insurance will only cover approximately 90%. So I'm doing some math, and get a flash of panic when I realize that without help from a foundation, my meds could cost me around $1000 a month. Which I could swing. For a month or two. But not indefinitely. Not for life. And since there currently is no cure for CML, I'm looking at a life sentence here. While I'm in the hospital, my medications are part of my treatment. Thank you to my doctor for truly having my best interests at heart.
Again, no leukapheresis today. I'm glad of it. I'm starting to go crazy being tied down. I'm wouldn't call myself a super active person, but I am used to walking at least half an hour a day, and the only thing that I've been able to do for the past 5 days is get up to go to the bathroom. One of my nurses clears it with my doctor, and I take a walking tour of the ward. It is not nearly large enough. I go all the way down the hallway to the elevators, which I look at longingly, and then back down the hallway to the large windows at the other end of the hall. It looks like summer outside. It was persistently cold when I was admitted to the hospital. I touch the tempered glass, and it's warm. One more walk up and down the ward. Keith wheels my pole, pulls the back of my gown closed, and makes sure that I don't collapse. It's nice to have someone covering your ass. In more ways than one.
 |
| Free at last! |
Okay, no, so she was only holding pressure on my neck so that it did not bleed, but the pressure is pretty extreme. And I am so grateful that it is gone I can hardly stand it. It looks like I got bitten by a one fanged vampire, but I'm elated.
People are starting to get ready to get rid of me. If all goes according to plan, I'll be discharged tomorrow. I've already started to pack my things, which are few, but seem to be scattered about everywhere.
My nurse that night asks me if I have children. She obviously did not get the memo. I tell her that I do not, but that I do have a four year old niece. She stresses the importance of being very careful with my chemotherapy medication (Gleevec) and tells me that I must be careful not to expose children to any of my bodily fluids, especially urine or vomit. Specifically large amounts of urine or vomit. Um, excuse me? Why in the world is this something that she's telling me? Don't pee or puke on any kids. Um, check. Got it. I'll do my very best.
I wake up the next morning knowing that I need to stay calm. They won't release me until after I've had my meds, which usually come in around noon. I pick out clothes to wear. This is the first time that I'll be fully dressed since I came into the hospital. I wait for my WBC (white blood cell count to come back), and I'm down again to 242000. Hard to believe that I was twice that when I was admitted. My count has been coming down so slowly that I don't think I'll ever get to normal (between 4000-11000). But if they think I'm okay to go home, I'm certainly not going to fight them on that point. Look what such good care they've taken of me so far. (In all earnestness.)
After I get dosed, I can't help it anymore, and I get up to give myself my last washcloth bath. I can't do my shirt until they remove my ECG and iv, but I can put on underwear and pants. Except I can't. The clothes that I have chosen are not fitting. I am fat! Retaining so much water that my legs are painful. I feel like they don't bend right, like fatness is keeping them from fully bending at the knee. My hips are far wider than I'm accustomed to...and maybe it feels like I'm being shallow and petty about it, but the truth is that it's uncomfortable, bordering on painful. I lift up the little panel on my bed, and push the button that will take my weight. It's in the 160s. I'm retaining over 10lbs of water! But there is no way I'm mentioning this to anyone until they've signed my discharge papers. There is nothing that is going to keep me from getting out of the hospital today. So yoga pants it is.
It of course takes ages between the promise of discharge, and the actual discharge paperwork, prescription's, instructions, excetera. I've got my eye on the prize, though.
Keith shows up right on time, comes all the way in to get me, and then has to run out to bring the car up to the entrance to pick me up. My nurse tells me that she is supposed to wheel me in a wheelchair, but agrees to let me walk while she accompanies me.
The car pulls up to the curb, and as I slide in, I sigh with relief. I feel like the fight is over, but I suppose, really, its just beginning.
CML - Day Four
Everyday in the hospital my white counts go down a little bit more. Every time they do, I feel like I've achieved a personal victory. My sister, Lacey, and my boyfriend, Keith, are my white count monitors. If they're not there with me for my leukapherisis, they call afterward to find out my count. I'm going down too slowly. By day four I'm still in the high 200,000's. I feel like it's going to take forever for me to get outta here.
And then on my fourth day in the hospital, they decide not to have me undergo leukapheresis. I think they want to see if the medication is working on it's own. My counts go down. Another victory. Finally, the thing inside me - this insidious thing that is trying it's best to kill me - is losing it's fight. And I'm winning mine. I feel triumphant. So now it's just a waiting game.
The nurses are nice to me - I'm on the telemetry ward, so I'm probably their youngest patient - and make small talk while changing my linens and bringing in my meds. They always ask about my family. "Do you have kids?" I do not. I've been on the fence about wanting to have children for awhile now...every time it comes up, I think to myself, not yet! I'm too young. But now it seems like I may have waited too long. Word somehow gets around to my oncologist that I don't have children, and he tells me that while I'm on Gleevec, I should take measures not to become pregnant. (I look it up later and find that Gleevec has been found to cause miscarriage and profound birth defects.) So yeah. That's a little heartbreaking.
And then on my fourth day in the hospital, they decide not to have me undergo leukapheresis. I think they want to see if the medication is working on it's own. My counts go down. Another victory. Finally, the thing inside me - this insidious thing that is trying it's best to kill me - is losing it's fight. And I'm winning mine. I feel triumphant. So now it's just a waiting game.
The nurses are nice to me - I'm on the telemetry ward, so I'm probably their youngest patient - and make small talk while changing my linens and bringing in my meds. They always ask about my family. "Do you have kids?" I do not. I've been on the fence about wanting to have children for awhile now...every time it comes up, I think to myself, not yet! I'm too young. But now it seems like I may have waited too long. Word somehow gets around to my oncologist that I don't have children, and he tells me that while I'm on Gleevec, I should take measures not to become pregnant. (I look it up later and find that Gleevec has been found to cause miscarriage and profound birth defects.) So yeah. That's a little heartbreaking.
Thursday, July 17, 2014
CML - Day Three
Little did I know when I went to the Emergency Room on April 04, 2014 that I would staying in the hospital for several days.
By my third day of hospitalization, I had it down. I had learned how to unplug my own iv pump and wheel my little stand into the bathroom (where I was secretly emptying my own pee monitoring cup), found a way to sleep my way through large portions of the night (thank you, morphine), and knew that the chocolate cake was the best thing on the menu. There were more than a few bumps in the road to get there, though. I broke down crying when I dropped my dinner off my fork, into my lap. So frustrated that I was so weak, and helpless. Keith took the brunt of that tantrum. Every day he would come in. Everyday, drove an hour to be with me, and then an hour home. I could tell that he wasn't eating well, but he's not good at eating well anyway. He's one of those people that forgets to eat. I don't think I've ever missed a meal in my life because I forgot, but more than once I've come home from work to find a single coffee cup in the sink, and that's it. Food is unimportant to him. It's a foreign concept to me.
There are things that ARE important to him, however, and it seems like he's barely holding it together with those. He's one of those people that must be well dressed at all times. He can't even run down to the market wearing sweats - despite the time - he changes into pants that button, and shoes that tie, for all public appearances. So I know that he's not holding it together as well as he pretends, when he comes in one day wearing two different shoes. Not vastly different, mind you. They are both white shoes, but they are not a matched pair. Unheard of. And this is how I know how worried, and distracted he really is. Because when he's there with me, he tries not to let on. He brings me cold bottles of diet coke, and crawls up on my bed, and we talk about the things that we're going to do when I get out of there. Digging for diamonds, blizzards from Dairy Queen, seeing the Northern Lights. I feed him bites of my chocolate cake, and I look at his mismatched shoes, and I know that he's holding it together by a thread. But he's pretending beautifully. And I don't think that I could love any one any more than I do in those moments.
I have visitors everyday. Keith tries to come in the evening, after everyone else has left, so that I'm not alone for very long. My uncles show up randomly at all times, with books, and stories about fishing trips. My mom and my sister are constants that float in and out, and bring me nice smelling soap, and clean underwear, and sunflower seeds. (For months I've had an addiction to sunflower seeds. Shelled salted sunflower seeds. I eat pounds of them. Everyday I eat thousands of calories worth of sunflower seeds. I fantasize about them, about swimming in a vat of sunflower seed kernels with my mouth open. I crave them. And then...all of a sudden...I don't want them anymore. I don't crave them like I did. Was it the cancer that made me want them in the first place? All I know is that something has changed.)
I'm not myself. I don't want food, and I'm hot. I'm so hot that I'm sweating buckets. Everyone comes in wearing sweatshirts, so I'm pretty sure that it is not hot, but I can hardly abide my bed and my gown. When I lean forward Keith fans my back, and wipes me down with a cool wash cloth. But it's not enough. I'm burning up. I hate to be a pain in the ass, but I ask the nurses for a fan. "We'll see if the lift crew can find one." The lift crew? Is this their crew of men that lifts heavy objects? How big is this fan? And then a slight girl in scrubs brings one in, and I realize that the lift crew is called the "lift crew" because they "lift" aka steal items upon request. It makes me giggle. And finally I begin to cool off. Thank you lift crew.
One of my most traumatic experiences happens when no one's there. When I'm all alone. Every 8-12 hours I need a new iv bag. An alarm beeps when there is an hour left, no matter the time. Two am? Beep, beep, beep. Midnight? Beep, beep, beep. 10 o'clock in the morning - beep, beep, beep. So it has to be my fourth morning in, I'm guessing 4 am-ish and beep beep beep. Isabel, my favorite nurse, comes in to replace my bag. But something is wrong this time. It looks like the vein in my arm has collapsed. She pulls my needle, and attempts a new line in the top of my hand. Twice. My skin tone is so fair, that my veins are usually visible to the naked eye, but I'm so full of fluids, so puffy, that they keep eluding her. And I start to cry. Silently, but I can't help myself. She tries one more time, in my elbow crease, but that needle does not want to go in. She calls someone else in to do it. They're trying to stay in my left arm, since I've got so much going on my right side, what with the port in my neck and all. The new nurse gets it in on her first attempt, in an awkward spot on the inside of my wrist on the same side as my thumb. I bleed onto my medical identification bracelets. She apologizes, and I try to be strong and tell her that it is okay, but I cry the whole time, because it hurts, and I hate this. I never thought I would be here long enough to need another IV. They come in everyday and take my blood, so you would think that I'd be used to being poked and prodded by now, but for some reason this is just the straw. You know the one. The last straw. The final straw. The straw that broke the camel's back. And all of my sadness, my fear, and utter despair comes flooding out of me, and I cry into my sheet, huge, loud, wrack my body sobs, while everyone passing by in the hallway is kind enough to pretend that they can't hear. And thankfully, after a few minutes, I pull myself together again.
A momentary lapse.
I have no idea when I'm getting out. I have no idea how much longer I'll need to be here, and every time I ask when they think I might be able to go home, they tell me "Maybe tomorrow."
I wish tomorrow would come already.
By my third day of hospitalization, I had it down. I had learned how to unplug my own iv pump and wheel my little stand into the bathroom (where I was secretly emptying my own pee monitoring cup), found a way to sleep my way through large portions of the night (thank you, morphine), and knew that the chocolate cake was the best thing on the menu. There were more than a few bumps in the road to get there, though. I broke down crying when I dropped my dinner off my fork, into my lap. So frustrated that I was so weak, and helpless. Keith took the brunt of that tantrum. Every day he would come in. Everyday, drove an hour to be with me, and then an hour home. I could tell that he wasn't eating well, but he's not good at eating well anyway. He's one of those people that forgets to eat. I don't think I've ever missed a meal in my life because I forgot, but more than once I've come home from work to find a single coffee cup in the sink, and that's it. Food is unimportant to him. It's a foreign concept to me.
There are things that ARE important to him, however, and it seems like he's barely holding it together with those. He's one of those people that must be well dressed at all times. He can't even run down to the market wearing sweats - despite the time - he changes into pants that button, and shoes that tie, for all public appearances. So I know that he's not holding it together as well as he pretends, when he comes in one day wearing two different shoes. Not vastly different, mind you. They are both white shoes, but they are not a matched pair. Unheard of. And this is how I know how worried, and distracted he really is. Because when he's there with me, he tries not to let on. He brings me cold bottles of diet coke, and crawls up on my bed, and we talk about the things that we're going to do when I get out of there. Digging for diamonds, blizzards from Dairy Queen, seeing the Northern Lights. I feed him bites of my chocolate cake, and I look at his mismatched shoes, and I know that he's holding it together by a thread. But he's pretending beautifully. And I don't think that I could love any one any more than I do in those moments.
I have visitors everyday. Keith tries to come in the evening, after everyone else has left, so that I'm not alone for very long. My uncles show up randomly at all times, with books, and stories about fishing trips. My mom and my sister are constants that float in and out, and bring me nice smelling soap, and clean underwear, and sunflower seeds. (For months I've had an addiction to sunflower seeds. Shelled salted sunflower seeds. I eat pounds of them. Everyday I eat thousands of calories worth of sunflower seeds. I fantasize about them, about swimming in a vat of sunflower seed kernels with my mouth open. I crave them. And then...all of a sudden...I don't want them anymore. I don't crave them like I did. Was it the cancer that made me want them in the first place? All I know is that something has changed.)
I'm not myself. I don't want food, and I'm hot. I'm so hot that I'm sweating buckets. Everyone comes in wearing sweatshirts, so I'm pretty sure that it is not hot, but I can hardly abide my bed and my gown. When I lean forward Keith fans my back, and wipes me down with a cool wash cloth. But it's not enough. I'm burning up. I hate to be a pain in the ass, but I ask the nurses for a fan. "We'll see if the lift crew can find one." The lift crew? Is this their crew of men that lifts heavy objects? How big is this fan? And then a slight girl in scrubs brings one in, and I realize that the lift crew is called the "lift crew" because they "lift" aka steal items upon request. It makes me giggle. And finally I begin to cool off. Thank you lift crew.
One of my most traumatic experiences happens when no one's there. When I'm all alone. Every 8-12 hours I need a new iv bag. An alarm beeps when there is an hour left, no matter the time. Two am? Beep, beep, beep. Midnight? Beep, beep, beep. 10 o'clock in the morning - beep, beep, beep. So it has to be my fourth morning in, I'm guessing 4 am-ish and beep beep beep. Isabel, my favorite nurse, comes in to replace my bag. But something is wrong this time. It looks like the vein in my arm has collapsed. She pulls my needle, and attempts a new line in the top of my hand. Twice. My skin tone is so fair, that my veins are usually visible to the naked eye, but I'm so full of fluids, so puffy, that they keep eluding her. And I start to cry. Silently, but I can't help myself. She tries one more time, in my elbow crease, but that needle does not want to go in. She calls someone else in to do it. They're trying to stay in my left arm, since I've got so much going on my right side, what with the port in my neck and all. The new nurse gets it in on her first attempt, in an awkward spot on the inside of my wrist on the same side as my thumb. I bleed onto my medical identification bracelets. She apologizes, and I try to be strong and tell her that it is okay, but I cry the whole time, because it hurts, and I hate this. I never thought I would be here long enough to need another IV. They come in everyday and take my blood, so you would think that I'd be used to being poked and prodded by now, but for some reason this is just the straw. You know the one. The last straw. The final straw. The straw that broke the camel's back. And all of my sadness, my fear, and utter despair comes flooding out of me, and I cry into my sheet, huge, loud, wrack my body sobs, while everyone passing by in the hallway is kind enough to pretend that they can't hear. And thankfully, after a few minutes, I pull myself together again.
A momentary lapse.
I have no idea when I'm getting out. I have no idea how much longer I'll need to be here, and every time I ask when they think I might be able to go home, they tell me "Maybe tomorrow."
I wish tomorrow would come already.
Subscribe to:
Posts (Atom)