I think denial runs in my family. We seem to be pretty good at ignoring the things that we don’t want to see. For instance, I’ve been fighting my battle for seven months. I still go through most days not thinking about what is happening to me. But then, out of nowhere, it’ll hit me like a brick in the face. I almost died. Twice. The second time was pneumonia. We still don’t know why, they could never pinpoint the virus, but we do know it hit hard and fast. And I let it fester for a few days. Now, I will say that P spent every one of those five days calling the doctor’s office and on call nurse begging them to take us seriously. It started off with a small fever, just in the 99-degree range that started the day after a blood transfusion. They said it was a mild reaction to the blood and not to worry. So we let it go. Fast forward five days and I’m coughing and running a 105-dgree temperature. And they kept saying that I would be fine and not to worry. I went to far as to go get chemo. It wasn’t until I was waiting in radiology for my spinal tap for someone to call my health into question. The radiologist refused to perform the procedure and called the ER. I typically get to the hospital around 0630 for my spinals and I didn’t get to a room until that night. I spent a good portion of the day sitting in the ER ( a horrible place for a chemo patient to be) waiting for a room to open up on the oncology floor. Anyway, by the time I made it to the hospital, things were getting pretty fuzzy. I remember my mom bringing cake and the kids to celebrate P’s birthday. I vaguely remember the respiratory people bringing in a nebulizer to try out some breathing treatments. And that’s it. I woke up about a week later in ICU with P in my face telling me to breathe. I was confused and I didn’t know what was going on. I was scared and people were yelling at me and I was in a strange place and I couldn’t breathe and my throat and jaw hurt and my panties were missing and there was a doctor standing in the corner of the room scowling at me and there was an oxygen mask on my face and I didn’t know what was happening and I was scared and crying and I was coming out of a fog. It was a mess. When things finally calmed down and the Bipap was affixed to my head and I got my breathing under control (and Dr Scowly bitched me out) P told me that I had taken a turn for the worse the week before and they had to intubate me and (for lack of a better word) put me in a chemical coma. And apparently, my nurse forgot to tie both my hands back up and I tried to rip out the breathing tube with my free hand. I spent a few more days in ICU, but I was able to get back to room oxygen very quickly once I woke up. It wasn’t until I returned to the oncology ward that I found out what had happened. My nurse (when you spend a month with these ladies, you develop a pretty good relationship with them and they remember you) was pretty frank with me when I was discussing what happened. She was also pretty stern with me about my waiting to seek treatment. She made me promise that I would just go straight to the hospital if I were running a fever and the office wasn’t taking me seriously again. And then the nurse that had been taking care of me when I got intubated came to see me. And she told me the dirty details. And she told me that she thought I was going to die. And it disturbed me. Here is a nurse, who sees all manner of shit, telling me that she thought she was going to lose me. Do you know how terrifying that is?
Onto number one. I’ve felt like shit for years. At first I thought it was depression and being fat. I’m not built to be a big person. I’m 5’2″, if I stand really tall. When I got pregnant with C, I started eating fast food (which was totally not the norm for me) and my weight ballooned. I had a bit of success with Weight Watchers in between kids, but I was never really able to lose weight again. I was diagnosed with hypothyroidism around age 30, so I figured I would probably never lose weight. After all, WW didn’t help, calorie counting, vegetarianism, raw veganism, atkins, south beach, P90, the list goes on. I would do it, and I would lost 5 pounds at most. So I gave up. I had no energy, I was depressed, I had tummy issues, yada, yada, yada. Anyway, I eventually found Robb Wolf and Sisson and had my AHA moment. But I digress, what I’m talking about today is that I had been sick. Towards the end of October I had been feeling a little more run down than usual. And I had a perpetual headache and I was developing a slight cough. I let it go on for about two weeks and on Halloween I decided that I was going to call my physician the next day. On November 1, at 0530, I woke up in unimaginable pain. I suffered through the whole day, hoping that it would go away. I finally called my mom around 5 PM, crying and begging her to come over. When she got to my house, she told P to take me to urgent care or the ER because I needed to see a doctor. Let me stop right here and tell you something about my mom. We DID NOT go to doctors when I was growing up. EVER. I got food poisoning when I was a teenager and threw up for three days. No doctor. You went to the doctor if you were dying. That was all. Anyway, P took me to the ER in Anderson (a mistake, but live and learn) where we stayed until 0500 the next morning. In the end, they sent me home with some morphine and a possible gallbladder issue, even though the pain wasn’t in the right spot. I went to my physician the next morning and we decided to wait for the results of a scan that had been scheduled for the next day. I went back to the hospital for the gallbladder scan, lots of insanity happened, and it ended with the on call surgeon refusing to remove my gallbladder because the pain wasn’t in the right location and the scan didn’t show any stones. During all the hubub, a random doctor had ordered a CBC, and the results showed a problem with my platelets. This took us back to my physician, and I ended up admitted to the Oconee hospital for a platelet transfusion because they had dropped so low. This is when I first met who would become my oncologist. We spent the last couple of weeks of November commuting back and forth to OMH and my doc’s office getting transfusions and infusions and CBCs, but nothing was working. I was scheduled to go in for another CBC when my doc’s office called. The hematologist was insisting that I come in to discuss my blood work. This freaked me out a bit because I had convinced myself that the pain I had been in was just food poisoning and possibly Celiac disease. Why was this hematologist at the Cancer Center so determined that I come into his office? I started to refuse, but I ended up deciding to go on in to listen to what the man had to say. When we got there, I was in for a big surprise. They were telling me that I was having a procedure done and it wasn’t until they handed me a consent form that I knew that I was getting a biopsy. What the crap, man? Biopsies were for people with cancer. I had been diagnosed with ITP and the stomach thing was a gluten intolerance. Right?
Well, I got a bone marrow biopsy, which normally takes 20 minutes, max. This one took 2 and 1/2 hours. They were never able to extract any marrow. They had to send in core samples to the lab in California. At this point, this doctor, whose name I couldn’t pronounce, who I have met once, is telling me that he just wants to be sure. That I need to prepare myself for the possibility of leukemia. I was in shock the whole time. I had a million things going through my head. I remember telling him that it was just food poisoning. That we thought it might be celiac. He just pat me on the back and told me that he would call the second he had news. P led me out the door and I barely made it to the car before I started crying. But even then, I told myself no. I just kept saying celiac and food poisoning. It took longer than normal to get my results because they had to decalcify the bone to do the tests. But on December 1, I woke up to the phone ringing. It was 0930. It was the Cancer Center. It was this doctor with the funny name that I had only met twice. And he was telling me that he was sorry. That I had leukemia. That it was ALL. That I had to get to the hospital that day because they had to start treatment immediately. He was asking if there was anyone who could watch my kids for me. And that I was really lucky because he was able to get me into this wonderful clinical trial. It was run by a wonderful team and it was showing great results and it was almost full, but he was able to get me in because I was a perfect candidate. That he was going to take care of me and I was going to be okay. I had gone numb as soon as I heard him say I’m sorry. I was crying, but I couldn’t feel. I spent the rest of the day making phone calls and crying and packing like I was getting ready to go on a cruise. And I obsessed about underwear. At some point I called one of the student loan people and told them I had cancer. I still have no idea what possessed me to do that one. I dragged my feet getting to the hospital. My mom and best friend were going to meet me there. A and I have been friends since we were 13 years old. We have been there for each other through every situation imaginable. So she was going to be there to help me get settled. I spent the evening with my kids. P had to drag me away from them. I managed to hold it together and sound happy, but I truly thought I was never going to see my children again. I had made it a point to have a little family portrait taken that day so the kids would remember what I looked like because I thought I was going to the hospital to die. Leaving my kids that night was hell. Anyway, P and I finally made it to the hospital. We were late. A and her mom made fun of me when I got there because the patient was the last person to make it to her hospital room. They all helped me get settled in, we spoke to a doctor and my nurse and got a bit more info. Then everyone left and P and I finally cried. It was all so overwhelming and we were so scared and we still had no clue of what was going on. P researched and I just kept on ignoring it. And it stayed like that for a long time.
I’ve researched a little bit. But to be honest, I find things that scare me. Like I find out that acute leukemias can kill you in a month or two if left untreated. I spent just over a month sick before diagnosis. My marrow was so packed (the pathology report noted that it was 90% blasts) that there was no liquid. How much time did I have left? Days? Weeks? It scares me. And while I’ve been lucky…I’ve pulled through every issue like a champ. I’m currently clear of leukemia cells and have been since my first month of treatment, I’ve pulled through the pneumonia, I’ve pulled through the diverticulitis, I’ve pulled through multiple transfusions…I’m still terrified that IT will come back. I don’t know if I’m ever going to feel “safe” again. Every cough, every headache, every bruise, every ache is going to cause concern. Maybe I’ll eventually get over it. I hope I do. I want to live my live, not live in fear of death. But I’d like to do it without my head in the ground.