Where to begin, where to begin... I've rewritten the first couple of lines of this first post a few times. They were all terrible. So, I'm just going to start. Hi, my name is Malinda in case you don't know me. Writing down my story, my thoughts, my whatever has been weighing on my mind for some time. Over the last couple of years I have had many nights where I go to sleep thinking of things I want to write and how I want to write them. But frankly, I've been too scared to put them down on digital paper and put them out there. So, with fear in my heart, here I go.
I mostly wanted to write things out for my daughter. I want her to know my story which is part of our family story which is ultimately her story. I want her to know what led us to her on a warm January day in Arizona. And I want to write this out sooner rather than later as I am scared that as time goes on I'll forget. I love you, Little Bear...here's our story:
I'll start with cancer. Cancer. The Big C. F-ing Cancer. It has many clever monikers and has been written about, talked about, cried about, and screamed about in too many people's lives. People have lived their whole lives in fear of it. It's the first thing the news or the media in general jump to when they want to shock people. THE SUN CAUSES CANCER. EATING CAUSES CANCER. BREATHING CAUSES CANCER. LIVING CAUSES CANCER. The funny thing is, I had not one but two types of cancer and all of my fabulously, brilliant and wonderful doctors have no f-ing clue why. Fun, right? So, now that I'm "cancer free," I have no idea what to avoid to prevent more cancer in my future other than the age old don't smoke, wear sunscreen, don't-breathe-quite-so-much-in-case-there-is-a-toxin-in-the-air recommendations. Fortunately for me, my doctors did know how to kick the crap out of cancer and get it the hell out of my body. So, my glass is definitely half full and I am eternally grateful and forever in debt to several teams of wonderful people.
Five years and a week ago, my life was very different. I was feeling quite sick (more on that later, I don't want this to be the longest blog post ever) but was generally happy. It was summer break from graduate school. I was collecting data and working on my Master's thesis, I had had a short but wonderful vacay in Las Vegas a month before with very dear friends, and I was gearing up for a minor surgery that was supposed to cure my ailment. I knew my doctor well, she had performed this surgery on me before and I had minimal worries about it as both she and I were convinced this would solve my current health problems. After all, it had done just that a few years before. So, I prepped for surgery, signed all the paperwork in case I died on the table and wanted to sue, and looked forward to feeling better. I walked into the hospital on July 18th worrying more about how they were going to get a needle in my arm than the actual procedure. I had done this before.
When I woke up from the surgery I remember feeling really odd. It just felt wrong. This was different than the first one. I was in more pain...a lot more pain. I felt sicker. I shrugged it off. This is normal, right? Surgery and anesthesia make you feel bad. Pain is normal. Maybe she was more aggressive with the scalpel this time. Nothing to worry about. It was done and I was going home to start feeling better. The only problem was that I did not start to feel better.
I had been running a low-grade fever (think 99.0 to 100.5) for months. Every time I went to the doctor, my temp read high. Not super high, but not normal. My doctor wasn't sure what it was but she also wasn't concerned about it. I didn't feel feverish...sure I was hot a lot (but that was normal for me and it was summer so, duh) but I didn't have any other fever symptoms. There was also no reason that she could find that would be causing a low-grade fever, so we ignored it. But, after surgery one of the first instructions you are given is that if your temperature goes over a certain number (in my case 100), you have to go back to the doctor or hospital. My surgery was on a Friday, so on Sunday when my temp spiked to 101, I was back in the hospital trying to figure out what the hell. I spent 8 very uncomfortable hours getting poked and prodded and examined repeatedly with no clear diagnosis. The ER docs could not figure out what was causing my temp. So, I was sent home with antibiotics just in case and told to rest.
Monday rolls around and I get a phone call. It's my doctor's office nurse telling me that I have to come in for an appointment. And they've already scheduled me one for tomorrow: Tuesday, July 22nd. "This is weird," I thought. Isn't it the other way around usually...the patient calls the doctor to demand an appointment? But...I was just in the hospital with that weird, unexplained fever. Phew, she's just following up on that to make sure I'm okay after surgery. So, I blindly, blissfully, stupidly agreed to the appointment time that only I could attend as my boyfriend (now husband) would be at work. I think I mentioned to him that I had to go back to the doctor, but it really wasn't an important conversation on the 21st of July.
On the 22nd of July the importance of nearly all conversations in my life changed drastically. It was a bright, sunny day. I remember being a touch nervous as I drove to the doctor's...I mean WHY had they insisted on this appointment. No, no, nothing is wrong, Malinda...carry on. I walked into the waiting room and there was no one there. Not a single patient. While this felt weird, I was happy I did not have to wait long. The nurse came right out for me and she stood by my chair as I gathered my purse and put down the magazine I had no chance to read while waiting. Again, weird. She checked my vitals...again with the low-grade fever!...and sat me in a room to wait for the doc. I think I maybe had like 5-10 mins by myself. I checked my phone. I swung my legs. I looked out the window. Then my doctor came in. I brightly said, "Hi, how are you?" She gave me the oddest look...I can't even describe it. She didn't meet my eye and just said "I'm just okay" in a sort of sighing, quiet way. Then she sat down and my life exploded. She turned to me and said, "the results of your pathology came back. I'm sorry to tell you but you have cancer." I know it is cliche, but it is truth: Time Stopped. I stopped breathing. I stopped thinking. I stopped moving. I stopped hearing. I stopped seeing. For about 1 second, nothing happened and I was separate from the world. That was when the "otherness" was born. During that 1 second my life's timeline lurched onto this strange, other road. A road I had no idea how to handle. I didn't even know where it was, where I was, or where anything was. Nothing made sense. After that 1 second there was two of me...the one with cancer and the one who continually screamed in the back of my head "THIS IS NOT HAPPENING TO ME. THIS IS NOT MY REALITY. I DON'T HAVE CANCER." She didn't shut up for a few weeks...and made very uncomfortable appearances repeatedly over the next year or so. More on that later.
After that 1 second, everything started and time sped up. I started shaking. I started crying. I gripped my chair so I wouldn't fall off and my legs were swinging and my feet were tapping like mad. My vision returned but it was tunneled onto my doctor's face. She had to be wrong. My brain started thinking again but not very well. I remember wondering what the hell pathology she was talking about...it took a minute for me to figure out that, of course (!), they would have biopsied the tissue from my surgery. Breathing was hard. Remembering to breathe was hard. I consciously had to remind myself to take breaths. Then I would forget again. I was crying, but not sobbing. I didn't want to pass out from the fear and I was worried that if I went into convulsive sobs and desperate crying I would pass out. That would be so embarrassing. I was twitching. Ugh, I just could not stop twitching. I could not stop the tears. They just poured of their own free will. People have often asked me what it was like to hear those words for the first time. The best I can answer is that it was a total body experience for me. I was hyper-aware of every cell, every hair, every brain synapse for about 10 minutes. Up to that point, it was the single, worst moment of my life.
I don't know if my doctor said anything during my first freak out. I could see her face, but I was having trouble focusing on anything she said. Everything was confusing. There were too many questions in my head that I couldn't sort out to figure out which ones I should ask and when I should ask them. And how the hell was I supposed to remember her answers! I think she said some stuff and then asked me if I had any questions. I asked her what kind of cancer it was. She said "it is uterine cancer, but I can't tell you much more, I'm not an oncologist." Oh God. I have to have an oncologist...AN ONCOLOGIST. More freaking out. I asked her how bad it was. She got this really sad look on her face and said, "I don't know but the pathology came back as poorly differentiated. That means it is aggressive. I'm not an oncologist so I can't tell you more, but I've never seen anything like it. This is not about you having children anymore. This is about saving your life." Okay...more and more and more freaking out. Ugh, even as I type this I'm sweating. "Poorly Differentiated." That haunted my dreams for months. And the whole "This is not about you having children anymore. This is about saving your life." She said that I few times. Those exact words. They haunted me too.
I'd like to tell you all how brave I was in the face of cancer and how I handled my mortality with dignity and intelligence. Truth is, I was a blubbering idiot. I wasn't sobbing, but that meant I could talk which meant I sounded really dumb. I think I even asked her, "What about school?" To which she replied, "I don't know." I hate that question...it was so stupid of me. I really needed to get myself together. My doctor knew this, so she eventually told me to take as much time as I needed and to call whoever I needed to call. She asked me if I had someone who could pick me up. I said no. She told me she had a referral to the best gynecologic oncologist at Huntsman Cancer Hospital that she wanted to give me. She had actually already called his office and, when I felt up to it, I needed to let her do some tests on me (a blood draw and EKG) so he could get me started on treatment as early as possible. Don't worry, she had worked with him before and he did the best hysterectomies in town. Again, my lack of intelligence reared it's ugly head and asked, "You mean you won't do my surgery?" She gracefully explained that cancer hysterectomies were much more complicated and that she was not qualified to perform them. Cue yet more freaking out.
After she left I called my boyfriend. I tearfully cried into the phone that I had cancer. To this day he says he did not freak out, but what I remember is him yelling into the phone, "You do NOT have cancer. She is just wrong. We'll go get 2nd and 3rd and 4th opinions if we have to. You do not have cancer!" If I ask him about this now he says, "Well, I didn't want you to have cancer." That makes sense. I don't know why, but me trying to explain to him that pathology doesn't lie and it does in fact appear that I have cancer and we shouldn't waste time on 2nd opinions calmed me down. I stopped crying for a bit and was able to go through the tests without blubbering. Although the nurses followed me around with a box of tissues that I got to keep. Score.
After my tests, the doc gave me my EKG results so I could bring them with me to my oncologist appointment...just in case the results weren't entered into the computer in time. As I prepped to leave, I had to ask one more stupid question. As I said, I was hyper aware of every cell in my body and as a result I was hyper aware I had this low-grade fever. I could feel the heat. And I knew I had had it for months. It was unexplained. And I wanted to know exactly how long I had had cancer as the longer you have it without treatment the worse it is, so I asked "Does cancer cause fevers?" All she said was, "I'm sorry. I just don't know. Maybe." Oh God. How long had I had those fevers?? Months and months! At least since February. It was July. Had I had cancer running unchecked in my body for that long?
As I walked out of the doctor's office, I started freaking out again. The tears flowed. I remember wondering if the doctor thought she would ever see me again. Would she check up on me via my medical chart? Would she ever think of me again and wonder if I was alive or dead? Would I be alive or dead?? Ugh. By the time I got to my car I could barely breathe and couldn't really remember how to drive. So, I called one of my best friends. And I walked circles around the car crying and screeching "I HAVE CANCER." It was compulsive. It felt insane. This could not be real. The otherness was uncomfortable.
I don't know how long I talked to her, but I eventually was able to get into the car. I remember her telling me to go home. She stayed on the phone with me the entire way home. She used a calming voice. She didn't cry or scream or freak out. She went into her clinical mode and kept calm and kept telling me what to do. I honestly do not remember much of my drive home...I have no idea how I did it. I just remember her voice was a lifeline that I needed to not die in a car accident before cancer got a chance to kill me. So thanks for that, Jubbins. You probably saved my life that day.
When I got home, the boyfriend was waiting for me by the front door. I walked in and we crashed into each other in a massive hug and I finally sobbed. I mean, bone wracking sobs. He was the perfect support...no tears, just calm reassurances and a lot of, "I love you." After a few minutes, I was able to sit on the couch with him and tell him what I knew so far. That was the easy part. The next part was harder.
And that is the story of when I found out I had cancer, Little Bear.
Til next time...Always and Ever After.
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