I know that sounds really fucked up, and is probably the biggest insult to cancer survivors everywhere, but it is true, and here is my story.
A few years ago, I started to get very sick. A different kind of sick, than my usual chronic sinusitis. I was tired all the time, and not just regular tired, but extremely exhausted. I would miss work all the time, because I had such malaise and fatigue. I ended up sleeping up to 20 hours a day, sometimes. Occasionally I would have severe joint pain in my hands, knees, and hips.
I saw my primary care doctor, who thought it might be a auto-immune problem, and told me to go to an endocrinologist. All of the blood tests he took came back negative. He told me to see a rheumatologist, as it might be arthritis due to the joint pain.
In the meantime, while I waited on that appointment, I would often get inexplicably dizzy, and get confused. I started having trouble remembering things, and it felt like at some points my brain was in a thick mud instead of the usual clear water it was normally (this is the best way I can describe the feeling.)
I advised the rheumatologist of all of this, she took took lots of blood tests that came back negative, and she suggested it was chronic fatigue syndrome. I did not believe this is what I had, but she said the treatment was simple, 3 pills a day of tramadol, and then I would get better. After I got this prescription from Walgreens and read the drug facts, I learned that tramadol is only a pain medication. I decided not to take that, because I don’t believe I needed pain medicine, even with my hurting joints. I think this is how people get addicted to pain killers, because apparently doctors give them out for no reason.
I wanted a second endocrinologist opinion, so I went to a reputable doctor downtown. He said that he did not believe I was sick at all, and took lots of blood tests just in case, testing for auto immune disorders again, and other thyroid problems. He said if I was sick, it was probably chronic fatigue syndrome like last doctor said. Of course all of my test were again negative, and he told my there is no treatment for chronic fatigue syndrome so I would just need to learn to live this way.
I went back to my primary care doctor, whose office makes you wait 3+ hours in the waiting room even if you have an appointment, before being called back by the nurse, and up to another 2 hours waiting on the doctor after you see the nurse, so it was an all day even every time I went there, unfortunately. They also took more blood tests, and said the only thing that came up weird was a high white blood cell count, that pointed to leukemia. This is when I prayed I had cancer, so that we at least knew what was going on. I was so elated to finally have an answer, and to finally know that I was going to be helped, even if it was a death sentence. My life was feeling like a death sentence already.
I went to an oncologist, who looked at my blood tests, and immediately said it was not leukemia, and that I probably just had an infection, and that my other symptoms were likely auto-immune. I advised him of all my tests results being negative, and he told me that it was probably chronic fatigue syndrome. I am sure you are thinking by now that I should just accept that diagnosis, and learn to live with my problems. I thought that also.
I switched primary care doctors, because of the above mentioned wait times. This new primary care doctor seemed genuinely concerned about all of the issues I was having. They told me that they would start treatment for chronic fatigue syndrome (Ha! There is a treatment!) The treatment was anti-depressants, which I reluctantly agreed to take. They also recommended counseling to learn live again with my symptoms. I started the Cymbalta, and went to a therapist.
The therapist did a couple of tests, and determined I was not depressed (like I told her.) She said for chronic fatigue syndrome, I would need to make a schedule that included regular bedtimes, and an alarm to wake me up. Also the schedule would tell me what to do during the day, so that the day was occupied with things like listening to music for an hour, watching tv, walking my dog, ect. Nothing complicated, unless you felt like I did. She also recommended regular massages, so I got a massage membership, so that I could go monthly. After several sessions with the therapist, I decided that there was no more I could get from the sessions and decided not to go back.
There were more and more times that I would act or talk like a small child. This is something people have told me I have done every once in a while my entire life. We just thought this was a weird quirk I had, because I never knew when I was doing it, even when it was pointed out, I thought I was acting normal. I was still going to the primary care doctor (actually seeing a PA every time.) She was doing lots of blood tests, because she knew I was unhappy with my diagnosis. The cymbalta made me very sick, so she told me to quit taking it. I got worse from withdrawal symptoms. We finally figured out how to taper the dose down, until I could stop without symptoms. She then put me on Prozac. This drug led to severe hallucinations, and she took me off that after about a month.
I started getting headaches often, and had trouble walking on occasion without almost falling over (or actually falling down.) I would cough so much that I would throw up, especially after these weird spells or episodes as we started to call them. The doctor then decided with me, that this was not chronic fatigue syndrome and that something else was really going on. She did endless blood tests that all came back negative. She agreed that I had seen a lot of doctors who could not help me, but she would like me to see one more, an endocrinologist friend of hers. This ended up being much of the same, with no answers, and a lot of negative blood tests.
I ended up having trouble recalling nouns, and couldn’t say the names of things I wanted or needed, and would have to point to them, describe them, or mime them out. This was frustrating, and made me cry a lot. I also started having severe difficulty concentrating. I started to forget more things, like locking the door, carrying my cell phone with me, turning the oven off, or that I was cooking at all until the house filled with smoke. I started keeping a notebook of all my symptoms, so that I wouldn’t forget to tell the doctors. During the episodes when I would write the information down, my handwriting was different, scribbley, difficult to read, and childlike.
I advised the doctor of all of this and she was at a loss. She started testing me for rarer and rarer diseases, but again nothing was showing positive. I think she started to think I was delusional or lying. It was becoming increasingly hard to think, and I would end up staring at walls for long periods of time. During these staring spells my eyes would drift apart so one would look straight or to the left and the other would drift up and to the right, and I would have double vision. I started “seeing stars”, hundred of tiny, little dots of light that were in my vision everywhere I looked at random times.
And then I read a book. Randomly. I just grabbed it one day at Target, because the name sounded interesting. Brain on Fire: My Month of Madness by Susannah Cahalan. I don’t read book blurbs, I judge books solely by covers and titles (I know, people hate this!) I am so glad this title grabbed me. As I started reading I started noticing some of the same symptoms. I didn’t know what she was going to end up having, so I started thinking it was probably a mental disease (Month of Madness, right?) I started telling my husband all of the similarities to her memoir and my current situation. I ended up finding out that part of her problem (the part that matched me) was called Complex Partial Seizures. This is something I had never heard of, I thought seizures we just convulsions on the ground (which are called Grand Mal or Tonic Clonic seizures BTW.) I told Wade that I might be having seizures. He said we would tell the doctor next time we went in. I started researching seizures, and thought this sounded more and more like me. Childlike regression was even a symptom.
For a period of around 5 days shortly after we thought this might be seizures. I got severely worse. I started having episodes that lasted hours instead of minutes. The left side of my face went numb, and my husband made me an emergency appointment for the doctor. I had moments of reprieve on the way to the doctors office, and when we got there the symptoms were gone. Luckily is a weird word to use here, but luckily I had another episode in the doctors office, so someone finally go to witness what was happening to me other than my family. She told us to immediately drive to the ER because she did believe I was having seizures, and I needed to be checked for more serious underlying causes.
The ER took me in, and Wade described my symptoms to the nurses, because I was having another episode. The nurses interviewed Wade about drugs I might have taken. He repeatedly told the nurses that I didn’t take anything or drink any alcohol. I had never done drugs, and had not had anything to drink in quite some time, as it was a rare occurrence at social gatherings. I don’t know when or why they finally believed him, but I stopped having a seizure sometime during his interview (which was not in the same room.) I too was grilled about drug and alcohol use, which I also told them I did not do. They must have believed us because we gave the exact same answers, even about the social drinking. They finally told me they did believe I was having complex partial seizures, also known as focal seizures. They took blood to see if I had an infection, a urine test to see if I was really on drugs, and a CT scan to confirm I did not have a stroke. All of these were negative. She told me to make an appointment with a neurologist as soon as I possibly could.
That night I started having seizures were I would jerk my head around, and tried to grab air over and over. I was unresponsive (as I am often during these episodes) I was unable to form words, though I was trying, and eventually went to bed. I woke up fairly quickly, and had no memory of the episode, but I did get very nauseated.
The next day I had four seizures according to my husband. The first one started 45 mins after I woke up, and lasted from 10:45a until 11:05am, and was a disassociation episode. He said I also crave water during this episode. He put me back in bed, and within mins of falling asleep, I again woke up coherent, with nausea. The next seizure started at 12:15p, and only lasted 3 mins. I had confusion, and again went to bed, and woke up shortly after coherent, and nauseated. The next seizure started at 5:30p and lasted 10 mins. I was childlike and disassociate. Wade said he put me to bed, and then I “came back”. The last seizure was from 10-10:05p. I am not sure what happened as we did not write this down. Came to, very nauseous, which made me cough a lot, then vomit. Wade videotaped a few of the different types of seizures to show the doctor, just in case.
The day after, I had two seizures that we know of. On the third day after going to the ER I was able to see a neurologist. They were very dismissive, and rude. They said not to use words like seizure or grand mal when describing my episodes, as we do not know what they are. She watched the videos with no comment. She told me IF I am having seizures then I can not drive for 6 months. She also said “the government says I have to tell you that you need to lose weight.” What does this have to do with my seizures? She said I probably needed a psych evaluation, but in the meantime I could go ahead and get an MRI, and an EEG. This is the only thing I am thankful of.
I went back to the primary care doctor, and told her everything the hospital said, and the neurologist said. She told me not to worry about the psych evaluation at this time. She believes they are seizures, and I should just see a different neurologist after I get my tests done. She also stopped all of my medicines, even allergy medicines, just in case something I was taking was causing the seizures. The next week, I had an MRI completed, and the week after, got the EEG test done.
For about 2 months it seemed like the seizures had stopped, or significantly lessened, so we were sure it was something from the meds making me have them. We went to the new neurologist (that a friend recommended) and told her everything about what had been happening. We showed her the test results from the MRI, and EEG, and everything the ER, primary care doctor, and other neurologist said. She watched the videos and immediately said they were Complex Partial Seizures, even the regression (childlike episodes.) She said the MRI shows I have a brain lesion in the mesial area of my left temporal lobe, and that is what has been causing my seizures. It was probably something I was born with, due to the location. It was clear to her it was not from head trauma. She said even though I had not had seizures in a few months, that would be normal for epilepsy as seizures wax and wane. She said this is why I had so many during that 10 day span. She also said that I had probably been having them since birth, but because they were so mild, or only lasted a few seconds, or only happened a few times a year, no one noticed. Plus no one in my family had heard of complex partial seizures. Remember earlier when we thought my behavior was just a weird quirk. She didn’t like the EEG results because they were not clear, so she had me do another EEG in the office, and had me follow up in the future. She said it was a good idea to get a neurological psych evaluation just to rule out bi-polar, although she did not think it was something that I had.
About a week later, I started having trouble standing still and would fall over. I also started dropping things. I got the psych evaluation which included several written and spoken tests, including personality, ADHD, and IQ tests. She concluded that I do not have ADHD, or bi-polar, although I do get a bit manic when I take steroids for the chronic sinusitus. She said I have anxiety, but who doesn’t? Also that my IQ was above average, and I do not have any damage to my cognitive skills.
I advised the neurologist of all this. She told me that was good. She said that I have temporal lobe epilepsy, and should no longer drive until I am seizure free for 3 months. She also said that my EEG was normal, but that did not mean I did not have epilepsy. A lot of people with epileptic seizures do not have positive EEG results due to no seizure activity during the test, because it can not determine things that happened prior to testing. I asked why I was having seizures again after 2 months being seizure free, and being off of the medicines. She said that the meds I was on would not trigger seizures, but the tramadol I took after surgery was a possible trigger. She said stay away from tramadol, wellbutrin (which I never took), caffeine, and any medicines or herbs that said alert or awake, including decongestant like sudafed (which I was taking often for the sinus issues.) I asked if epilepsy will go away, and she said no this is something I will have forever. I asked how do we know if I am just weird or when I am having a seizure. She said if it was out of the ordinary, it is a seizure. I asked if the brain lesion would cause other problems, and she said no it will only cause seizures. She said that we need to leave me alone during seizures, and just let me do my thing, unless I am trying to do something dangerous like use knives or the stove. I asked why seizures make me vomit or be nauseated, she said this was a common thing. She also said that it could be cancer or epilepsy, but there is no way to biopsy the brain lesion, because of the location, and that they would have to treat me for epilepsy.
She started me on Lamotrigine, which is an anti-seizure medicine on May 7, 2014. I had to increase the dose every week for 4 weeks. I went back to the doctor on June 4th because I was not better. She said to increase the dose for 4 more weeks, and then. take the drug for 4 weeks after reaching the maximum dose. I asked her if there were natural remedies for seizures, and she said no, and remember to stay away from alert/awake/non-drowsy herbs and medicines. I asked what will happen if I quit taking medicine. Can I get better on my own, or at least stay the same. She said no, because I will get worse, and will eventually start having grand mal seizures. She told me I was already getting worse, and needed to be treated. She said that I will take 2-3 more medicines and then discuss surgery. I told her I do not want surgery, and she said that there isn’t any other choices if the medicines don’t work, because I WILL get worse, and sometimes seizures can cause death.
So, yes, I wished for cancer. Cancer to me meant answers. Cancer meant hope. Cancer meant no more wondering. Cancer meant I wasn’t crazy. I know this is probably the worst thing someone who doesn’t have cancer has ever said. It probably is the equivalent of spitting in the face of everyone who has ever had cancer, or known someone with cancer, and for that I am sorry. I am sorry for the insult, but I am not sorry that I wanted an answer, even if that answer was cancer.