Numbness: Losing Emotions in the Face of Trauma

Well, as you can probably tell by now, my emotions are all over the place, leaving my motivation to go pouring down the drain and my anxiety levels to go through the roof. With less than a month left until I depart on my next great adventure to England, it's become increasingly difficult to focus on any one thing, especially blogging about my cancer. The most difficult day to work up the motivation to write even a short entry was this past Monday, when I was rushing around trying to get a scholarship application put together. I'd been working on a scholarship application for the SAMFund (an amazing opportunity for cancer survivors), which is divided into two parts; while I initially received an email saying that I hadn't made it into Part II of the application process, a few weeks ago, I got another email informing me that my Part II application was due. I've been crazily trying to get everything together, including a note from my doctor saying that I was in remission and giving my remission date or date of last chemotherapy treatment. After a long battle of trying to figure out just who was going to sign my form (this is something the nurse practitioner does, not the doctor), I finally was able to get it emailed back to me (a good two weeks or more after I had given it to them) on the day that I needed to fax it to the SAMFund to be uploaded. Thank god they had people working that weekend because as it turned out, the person who filled out the form had entered 'current' as my end date of treatment, so I had to drive down to my oncologist's office in the city at 7am on Monday morning on the off-chance that someone might be able to fill out the form properly for me.

Unfortunately, this is where I hit a snag. I got down to my oncologist's office, only to find out that the doctor was in clinic all week, the nurse practitioner was out on maternity leave, and the triage nurse was out for the day. The gent at the front desk was lovely and said he would see what he could do for me, as I was clearly frazzled and about to flip shit. I almost wish that he hadn't gone to find someone to sign the form for me. I almost wish that I hadn't woken up to my alarm clock that morning so that I wouldn't have had time to drive down into the city in the first place. Jon finally found a doctor to sign my form for me, but she ended up putting 11/24/2016 as my end-of-treatment date. And why would this upset me? Because I then had to ask her to write a note saying why she put a future date as my end-of-treatment date when I had finished my chemotherapy injections. Unfortunately, her replies were not something that I was prepared to deal with. First, she reminded me that I'm on oral chemotherapy medications for the next two years. Reasonable that she wouldn't write a past date as the end of my treatment when I am still technically doing chemotherapy. So I followed up by asking her to just write a remission date (which I believed to be sometime back in January, when my doctor told me that I was cancer-free). She refused on the basis that I wasn't in remission. I found myself biting my lip in the middle of an office full of people as she explained that remission is reserved for those who have completed the full treatment and are still cancer-free. Somewhere along the line, in our ignorance, my family and I had started using the term 'remission' to describe my state because I was a survivor, I had beaten cancer, and to us, cancer-free and remission were the same thing. They aren't.

Gutted and barely holding it together, I called my mum to tell her the news, sobbing on the phone as the valets at the cancer center tried to tell me things would be okay. Although I have yet to contact my doctor about my displeasure and concerns (I suddenly decided that I was probably going to die in a few days, a sentiment which I had fought hard to overcome, even telling my boyfriend that I needed to find him a suitable girlfriend for once I was gone), the experience made me think of just a few months ago, when I was still in the hospital.

From the time that I was diagnosed until some time quite a bit after I returned home from rehab, I felt emotionally numb. It was like a part of my brain just shut down and disappeared, pack up its bag and decided that moving away was a great idea. In a way, this saved me - I was able to take bad news and let it go in one ear and out the other. Admittedly, there were times when I was frustrated due to being in constant pain. And I told people to 'fuck off' on more than one occasion throughout my treatment. But my happiness, sadness, everything that made me feel like me had disappeared. While I retained bits and pieces of my humour, eventually that too was replaced with a matter-of-fact acceptance that I was going to die. There was no point crying about it. I was sullen. It didn't even bother me when I found myself blandly telling my psychologist that if I had the energy, I would have hung myself just be done with the pain. I said this in front of my mother, and devoid of emotion, I wondered how she was coping with hearing me say something so sad that I truly meant.

There was one day in particular, after I woke up from sedation and things were finally looking up a bit, when I remember talking to the palliative care team and psychiatrist and asking them if I would ever get my emotions back. I didn't know whether or not I missed them; they simply weren't there. It was like I knew how I should respond, but my brain couldn't find the proper reaction that I expected when it reached out. I shed a tear, one single drop, when I saw a commercial for a vacuum on the TV one morning at 4am when I couldn't sleep, which surprised me but also made me wonder if my emotions were there, just buried beneath the trauma of having full-body failure. I asked nearly every day if my feelings would come back. I was suffering from neuropathy in several places in my body, so I wondered if the numbness simply extended straight up to my brain and if it was just a matter of exercising my brain like exercising my muscles and nerves in order to 'wake up' the feeling.

It wasn't until my brother held me in a long embrace one day and whispered in my ear that he loved me and thought that he was going to lose me when things got so horrible that I actually cried. I could feel the tears running down my face as I realised that I could have died without knowing it, without having been able to say goodbye to the people I cared about. It struck me just how afraid I was of death, and the doctors had to drastically increase my depression and sleeping medications after this realisation because I was terrified of falling asleep. Whereas before my treatment, there was nothing that I looked forward to more than sleeping and getting the rest that I knew I needed, I was so afraid that I would lose consciousness again and die without knowing what was going on that I would refuse to let my eyes close. I became more away that I was trapped in my own body, unable to move due to the paralysis caused by my body rejecting the initial treatment, and my night nurses would often have to come and sit with me to keep me company at night after my mother fell asleep. We would speak in whispered tones about how the day had gone, my fears, my hopes, how much I appreciated all that they did. My apathy turned into gratitude as they would re-position my legs for me when they started to ache or when the nurses would bring me something to eat as a late-night snack to get the taste of nasty crushed medication out of my mouth. It was like my emotions were blossoming back into being.

The next major awakening came when my team came into my room one day to tell me that they had been looking over my last blood results and they believed that I should go ahead and apply for my PhD. I had been laying in bed for over two months, full aware that I had missed all of the application deadlines, but they brought a message of hope that I thought I would never hear. Of course, being paralysed, I still had a long way to go before I could really consider going abroad again, but I had my parents bring my computer in so that I could attempt to do some typing. Still, with all of the work that I had to do to re-learn how to swallow, speak, walk, and just generally function, I found that emotions such as happiness were still incredibly dulled, and a darkness had settled over me once more when I was transferred to rehab.

Once I was home, I resumed seeing my psychiatrist again. I told about how my emotions had disappeared, with slight peekings when something major happened to me. She responded by telling me that numbness is a coping mechanism that the brain implements in trauma. As with PTSD, which was my eventual diagnosis, general trauma in the moment can make your brain feel unsafe, and the experiencing of emotions can hinder physical recovery. In continuing trauma, such as battling cancer, the brain needs to focus on other functions in order to allow for the best chance of survival. It shuts down all 'unnecessary' functions in order to redirect power to the most base needs. This is one reason, I found out, why the doctors thought that my body started to shut down in the first place; I didn't need to be awake and alert to live, so my brain shut down those abilities in order to battle the cancer that was running through my blood.

Furthermore, the detachment can continue into your relationships; perhaps this is why I felt so disconnected from everyone during my treatment. Part of my decision to cut everyone off was because I didn't want people to see me struggling, didn't want to be overwhelmed with visitors, and didn't want to be the 'token sick friend'. But part of my brain realised that I couldn't expend the energy to maintain relationships while my body was in such a dangerous condition. To understand this reaction is to better understand the psychological web as a whole; every incident in your life will lead your brain to make decisions, and these decisions will almost always be out of self-preservation when it comes right down to it. This is why I found myself having violent flashbacks at home but only shaking and becoming slightly non-responsive while out and about -- my brain felt safe at home and in the doctor's office and allowed the flashbacks to take hold of me.

Dealing with numbness and PTSD, I imagine, is much like being out on a sailboat in turbulent waters; when you reach a dead calm, that it the time to be nervous. Those moments usually occur right before the floodgates open and the rain pours down, drowning you.

Slowly, I've regained my emotions to the point that I almost wish I was numb again. I had thought that having emotions back would feel like some glorious gift. I imagined that I would be happy and sad again, that I would be able to laugh and cry and love. While this is somewhat the case, I also find that I do deal with depressive episodes more than I had hoped. The return of emotions doesn't equate to being able to feel the way you did before you experienced severe trauma; rather, it simply means that you're able to feel the pain and joy of living that much more keenly. Now, when I reach for emotional responses, they're there, and often more dramatic than I would wish for them to be. But I suppose that re-learning proper emotional responses fits perfectly into the rest of my journey, and it makes me more aware of why I reached for a particular emotion in a particular circumstance, something that was simply a trained reaction before.

When you try your best but you don't succeed.

In my last post, I ended by saying that I would explain my treatment plan in this next post. Well, the way I originally understood things, I would be in the hospital for a total of two weeks on what's called a 7+3 treatment, which is used for AML patients. It basically means that you have one chemo drug (cytarabine) for seven days and another drug (antracycline antibiotic/idarubicin) for three days. This would be a total of ten days, and they would keep me for the remainder to make sure that the drug was effective and to monitor any side effects. I'm not sure if I was delusional at the time or if things just weren't explained clearly, but this was most certainly not the case when it came to my treatment. Or perhaps it was my complications which led to this being an inaccuracy. I had been looking forward to seeing my boyfriend, who was coming over to visit for a few weeks from England. I kept telling him and myself that I would be out in a few weeks, that this treatment plan would work and I would be in complete remission, that this had a 90%+ success rate, that I would be okay, that we would be able to snuggle up on the futon next to the Christmas tree very, very soon and everything would be fine.

But they weren't fine, and when the second bone marrow pull came back that I had APML, not AML, my treatment plan changed, and I was told that I would be in the hospital for at least a month. Still, I told myself that everything would be okay and that I should trust my doctors. As per requirements, the doctors had to tell me all of the possible side effects of this new treatment (arsenic/ATRA). The best part was that I wouldn't have to lose my beautiful purple locks of hair, and only 2% of people developed a heart murmur.

Here's a great pic of how
my hair likes to misbehave.

Everyone seemed incredibly optimistic about the plan, which brought me a lot of hope. The only problem was, I started getting weaker and weaker, and a few days later, we found out that I had developed a heart murmur (which I could feel through my PICC, as I am extremely sensitive), and I was immediately transferred to the Cardiac Intensive Care Unit and hooked up to a heart monitor for 24/7 monitoring. After that, things get incredibly foggy, and so I beg you to bear with me as I try to piece things together.

This past month has been a rollercoaster of ups and downs, emotionally, physically, mentally. Almost everything in my life has been stressful. First, we have the issue of my medical records. I have about a month and a half missing from my memory, with bits and pieces floating around, memories that I can't place or confirm without outside assistance. I've been reading through my mum's notes, but a lot of times, there are abbreviations or just blood results written down which, while helpful, don't provide me with a complete, informative picture of what happened. So, I decided to tackle the paperwork needed to retrieve my medical records from the hospital. I mailed off the paperwork, and a few weeks later, I received a letter requesting payment for my records. For my entire stay at the hospital, my records would have cost me $473.40 for a total of 6,739 pages, a testament to how extensive my stay was and how many tests and procedures had to be done. Since I don't have the money for that, I've opted not to follow through with the request, though I've asked my doctors to look into it for me.

Second, I've been feeling incredibly guilty about my work (or more like lack thereof). I have an amazing job, which I've been doing for over two years now. All of that had to go on hold when I was in the hospital. My company paid me for a few months while I was in the hospital, which was overwhelming, and that's part of the reason why I try to push myself so hard to get work done. But with my PTSD (brought on by the trauma of the hospital stay), my depression, my crises of existence, and other such strains of emotional turmoil, I often have a hard time getting focused on the tasks at hand. This drives me crazy because I always feel so guilty, despite my doctor telling me that I needed to let my body rest when it needed to do so.

Add to that my ever-growing list of things to do. I have a conference abstract that I'm trying to flesh out, an introduction to a book that I'm supposed to be collaborating on, planning for a bachelorette party the weekend before I leave for England, and then, a huge project in itself, working on everything I need to do for my departure to England. I have to apply for a visa, work out finances, and just hope that my dreams will come true. I think that's the hardest part of having cancer right now - my life got put on hold, and I'd like to get back to where I was but there are so many things that seem to be standing in my way.

And with that being said, I must sign off for the night. I've been mulling over this post for the last two hours, and I don't feel like adding anything more to it right now. And that's what I've come to expect - some days are better than others, and sometimes, I just have to remind myself to listen to my body and rest when I need to. Four months after coming home, I still have to be kind to myself and learn my new limits. I've been told that for every one day I spent in the hospital, I should expect it to take three days for me to recover. Well, when you factor in that in... I've got a long way to go.

The Initial Transfer.

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.

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.