The ambulance ride to HUP was interesting. First, it was my very first time in an ambulance, and they wouldn't let me go in a wheelchair because I was so weak, so I had to be strapped down to the bed and hauled up into the ambulance. Admittedly, as someone who has issues with claustrophobia and was already scared, this caused a problem and initiated a mild to severe panic attack. I tried to hold on to the memory of hugging my puppy, as that gives me comfort. Before the ambulance came to pick me up, I had asked if we could go home and get some things, see my puppy, and then drive down to HUP. But the issue was so urgent that I needed to be transferred right away. My dad ended up bringing my puppy down to the hospital to see me briefly before I left ('Just walk through with him like you're supposed to be here,' said the doctor.) and my pup instinctively knew that something was up. Mum put him up on my lap and he immediately started crying. Of course, this made me cry too because I kept saying, 'he doesn't want me, he doesn't want me.' Mum reassured me that he was just scared, but I started crying because I felt like my own pup didn't want to be near me and that maybe this was an omen that I was going to die. Silly, I know, but that's all that ran through my head.
When the ambulance finally arrived, the guys were really friendly - I think they could tell that I was scared beyond belief - and they tried to put my mind at ease, making jokes and being very gentle in their mannerisms. It lightened the mood, and my mum tried to take my mind off of things as well, but in the end, it was my humour that masked my pain and fear. I remarked that I would just pretend that I was Sleeping Beauty, waiting for my prince's kiss to release me from my bonds. That got a chuckle from my company, and one of the guys asked if they could use the line for other patients.
The ride took less than an hour, but my whole body hurt by the time I arrived at HUP. Those tiny boards you have to ride on really kill your butt and back. When they unloaded me from the ambulance, they took me through the ER entrance, but my mum had to go through security with all of her stuff. I had my phone on me, but there was no signal, so I wasn't able to text her about where I was. After waiting a few minutes in the ER entrance for her to appear, I started sweating and panicking even further, causing my heart rate to increase to the point that one EMT made me breathe while the other one went off to find my mum. He retrieved her and even helped to carry all of our stuff - it was really sweet of him. We were taken up to a room, which was a far walk from the ER entrance, on Rhoads 3. Once we got there, a team of doctors came in and said that they needed to do another bone marrow pull. I started to cry, remembering the pain of having a large needle shoved through my bone in order to extract the marrow. The reason why they do this test is to see if you have any cancer cells in your bone marrow, especially with cancer of the blood. Once you undergo treatment, another bone marrow pull is done, and if there are no cancer cells present, this is called molecular remission. Of course, while you hope that there's no cancer cells present in your bone marrow, you still have to undergo the bone marrow pull to check.
I had to get a second bone marrow pull upon my arrival at HUP because Bryn Mawr Hospital, where I initially was, was only able to check a limited amount of items. HUP has state-of-the-art equipment that allows for a closer reading of blood and marrow samples. This second pull is what allowed my doctors to realise that I actually had acute promyeloid leukemia (APML) and decide on a course of treatment. I'm not going to lie - bone marrow pulls suck like no other. It feels like an intense grinding in your hip region, and furthermore, even with the localised anaesthetic, you want to scream and move away from the pain. Of course, you need to be as still as possible so that nothing unexpected happens, so I opted instead for cursing and digging my nails into my mother's hand as she watched the procedure for a second time. I remember that she said I should keep it down and stop cursing because there were other people on the hall, but to be honest, I didn't give a fuck - I was in pain and I needed a release before I hauled off and tried to punch someone, injuring myself in the process.
I also had to have a PICC line placed in my arm in order to get the infusions that I needed. The PICC team came in, and they were very lovely ladies, which sort of put my mind at ease. I didn't really know what to expect. They numbed the area where they were going to place the PICC and they started to feed the line, when I started screaming in pain. Apparently, they had hit a nerve going in, and so what felt like liquid fire ran through my arm, down to my fingertips. I begged for them to stop, but the line had to be placed, so they tried a second time, this time getting it in and secured. For weeks after, my arm tingled, and I was unable to use it in the same way. Even wiping after going to the bathroom hurt to the point that I switched arms, angry and humiliated when I couldn't even clean myself. Eventually, the next time I tried to shower, I had to sit down on a shower chair with plastic wrapped around my PICC line and peripheral IVs so that it wouldn't get wet. I was wiped out, barely able to wash my hair, just wishing I could go back to bed, when I usually enjoy taking long, hot showers to let go of all of my pain.
Back in bed, I was hooked up to a machine and started on arsenic. The doctors went through the treatment plan with me (which I'll talk about in my next post), and I took my oral meds and tried to sleep.
Thursday, June 4, 2015
Monday, June 1, 2015
An Introduction.
I suppose that I should begin my story by introducing myself. My name is Bethany, although you can call me Beth, 'hey you!', or 'dude'. Until November 2014, you could have called me 'the girl with purple hair'. But then I was diagnosed with leukemia, and since then, I've been 'the girl with no hair'. At first that bothered me. I cried, I was angry, I got a wig, I was sullen, I was unresponsive, and I drew hair on a mirror with a marker in order to make myself feel like I had some semblance of normality in my life again. Eventually, I just decided to go ahead and accept it. If it's jolting to look in a mirror or catch a passing glance of myself in a reflective surface without hair, it's just as jolting to see myself with hair that isn't mine.
But I digress. I'd like to introduce you, primarily, to my diagnoses. On 21st November 2014, I scheduled a doctor's appointment after being incredibly tired, coughing up a bit of blood, and finding a huge, unexplained bruise on the back of my knee. The Internet told me that I had leukemia (and I still have a screenshot of the text message where my boyfriend told me to 'get the fuck off WebMD') and I really didn't want to go get checked out. I made excuses: maybe I was coughing up blood because I had had a bloody nose in the night; maybe I was tired because I had just spent a gruelling summer working on my Masters degree; maybe I had a bruise because my tiny little Westie had kicked me in the night. Everything was explainable in my mind, but I couldn't help the panic that arose. When the doctor told me that my symptoms didn't add up and she'd like me to get checked out at the hospital, I stopped trying to hold it back. My mum left work early and took me to the ER, where I got checked in and underwent blood tests, a bone marrow pull (during which I somehow did NOT curse), and a CAT scan with contrast. It was my very first time getting an IV contrast, and my mum wasn't allowed in the room with me. As the nurse went to put the dye in, I started screaming, as the dye burned all the way up and down my arm. Nothing stopped it except time, and while I begged the nurses to stop, the test had to be completed. My mum sat outside and cried, listening to me scream in pain, not knowing what was going on.
I think that in the back of my mind, I knew that something worse than the flu or mono was going on, despite the fact that the next day, the doctor told me that I had EBV (a strain of mono) and the day after, they told me I had CMV (another strain of mono). While they seemed confident that these two strains explained most of my symptoms, I couldn't shake the fear that something else was dragging me down. Visiting with friends for even an hour left me sleeping through the rest of the day. I didn't want to do anything. Finally, on the afternoon of the 24th, my mum convinced me that I at least needed to take a shower. Because I was so weak, the nurses told me that I needed to sit down when showering, but being the stubborn idiot that I am, I decided that I was going to shower like I usually do. This turned out to be an incredibly horrible decision, as I had to end my shower early when I started puffing, unable to breathe normally, completely out of breath from just standing. I was dizzy, my vision went white, and my ears were ringing to the point that I couldn't hear anything else. After towelling off (with my mother's help, since I couldn't even dress myself either), I finally made it back to my room to go to the bathroom. I could barely wipe myself after I went and I very nearly passed out when I saw that the remains were black. Completely black. I felt myself go even dizzier, and as quickly as I could without falling over or passing out, I flushed the evidence and went back out to my room, opting to stay silent. It was a horrible decision, but as it turned out, my silence didn't matter.
Fairly soon after I laid down, my doctor came in with a solemn look on her face. I knew immediately that she had some unpleasant news and asked her to wait until my mum came back into the room. Once settled, the doctor put her hand on my knee (never a good sign), and uttered the words: 'Your bone marrow pull came back. I'm sorry, but you have cancer.' As it turned out, I had been diagnosed with AML (acute myeloid leukemia), and they were going to transfer me to the Hospital of the University of Pennsylvania (HUP) in order to start treatment immediately. They had even sent out to Lankenau to get medication for me because they were unable to determine how long the cancer had been in my system, and this type of cancer, if left untreated, can kill in about a month, even though my doctor called this 'the most treatable of cancers'. By 8pm that evening, I was in a bed at HUP, ready to start my treatment.
What follows will be a chronology, as much as possible, of my experience. Please feel free to comment or email me if you'd like. I'm always open to a chat! I only ask that you reserve negative comments for your own mind, as this is my way of healing.
But I digress. I'd like to introduce you, primarily, to my diagnoses. On 21st November 2014, I scheduled a doctor's appointment after being incredibly tired, coughing up a bit of blood, and finding a huge, unexplained bruise on the back of my knee. The Internet told me that I had leukemia (and I still have a screenshot of the text message where my boyfriend told me to 'get the fuck off WebMD') and I really didn't want to go get checked out. I made excuses: maybe I was coughing up blood because I had had a bloody nose in the night; maybe I was tired because I had just spent a gruelling summer working on my Masters degree; maybe I had a bruise because my tiny little Westie had kicked me in the night. Everything was explainable in my mind, but I couldn't help the panic that arose. When the doctor told me that my symptoms didn't add up and she'd like me to get checked out at the hospital, I stopped trying to hold it back. My mum left work early and took me to the ER, where I got checked in and underwent blood tests, a bone marrow pull (during which I somehow did NOT curse), and a CAT scan with contrast. It was my very first time getting an IV contrast, and my mum wasn't allowed in the room with me. As the nurse went to put the dye in, I started screaming, as the dye burned all the way up and down my arm. Nothing stopped it except time, and while I begged the nurses to stop, the test had to be completed. My mum sat outside and cried, listening to me scream in pain, not knowing what was going on.
I think that in the back of my mind, I knew that something worse than the flu or mono was going on, despite the fact that the next day, the doctor told me that I had EBV (a strain of mono) and the day after, they told me I had CMV (another strain of mono). While they seemed confident that these two strains explained most of my symptoms, I couldn't shake the fear that something else was dragging me down. Visiting with friends for even an hour left me sleeping through the rest of the day. I didn't want to do anything. Finally, on the afternoon of the 24th, my mum convinced me that I at least needed to take a shower. Because I was so weak, the nurses told me that I needed to sit down when showering, but being the stubborn idiot that I am, I decided that I was going to shower like I usually do. This turned out to be an incredibly horrible decision, as I had to end my shower early when I started puffing, unable to breathe normally, completely out of breath from just standing. I was dizzy, my vision went white, and my ears were ringing to the point that I couldn't hear anything else. After towelling off (with my mother's help, since I couldn't even dress myself either), I finally made it back to my room to go to the bathroom. I could barely wipe myself after I went and I very nearly passed out when I saw that the remains were black. Completely black. I felt myself go even dizzier, and as quickly as I could without falling over or passing out, I flushed the evidence and went back out to my room, opting to stay silent. It was a horrible decision, but as it turned out, my silence didn't matter.
Fairly soon after I laid down, my doctor came in with a solemn look on her face. I knew immediately that she had some unpleasant news and asked her to wait until my mum came back into the room. Once settled, the doctor put her hand on my knee (never a good sign), and uttered the words: 'Your bone marrow pull came back. I'm sorry, but you have cancer.' As it turned out, I had been diagnosed with AML (acute myeloid leukemia), and they were going to transfer me to the Hospital of the University of Pennsylvania (HUP) in order to start treatment immediately. They had even sent out to Lankenau to get medication for me because they were unable to determine how long the cancer had been in my system, and this type of cancer, if left untreated, can kill in about a month, even though my doctor called this 'the most treatable of cancers'. By 8pm that evening, I was in a bed at HUP, ready to start my treatment.
What follows will be a chronology, as much as possible, of my experience. Please feel free to comment or email me if you'd like. I'm always open to a chat! I only ask that you reserve negative comments for your own mind, as this is my way of healing.
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