A story that, for whatever reason, I've not told on this blog before. Strange, this, because without this story, there is no blog. My diagnosis story. Pull up a snuggie and make sure your tea is warm, this is a long one.
Have you ever heard the story about the frog in the pot? It goes something like this: a frog, when placed in a pot with cool water which is then gradually warmed until boiling, will remain in the pot until it dies because it does not notice that the temperature is increasing. A frog which is dropped into a pot of boiling water will fight to escape the sure death of boiling. When things happen slowly, over months or years, it is difficult to notice the change. I suppose that's why they say that hindsight is 20/20, eh?
The story of how I was diagnosed with CML is quite like the story of the first frog. That's the scary part about chronic leukemias, they move slowly, warm slowly, and then by the time you realize that something is wrong, you're in a pot of boiling water, or chemo as it were. The question "how did you know you were sick?" is one that I get often and one that is always interesting to answer. I can answer this question honestly, or I can answer it with the 20/20 version, a bit more palatable for most. The honest version is: I thought I was allergic to blueberries (pause for head cock and quizzical look) and then I must launch into an explanation of how I got from blueberries to bone marrow transplant. The 20/20 version is: I was tired all the time and kept getting infections (ah, that's more like it) and then the transition is much more...common.
Lets go with the real version, shall we?
Two years ago, during the fall of 2008, I was in the first few months of my first year of teaching, P and I had just moved into a new apartment in the suburbs, we were planning our wedding and I was immersing myself in as much yoga as I could handle. Earlier that spring, I developed a strange rash across my eyebrows that looked a little something like a rashy zorro mask. The rash showed up after I used a fancy 'fresh' blueberry face mask from Lush. I popped a benedryl, returned the face mask, and went on my way. Over the next several months, the rash came and went, always on my face, disappearing as swiftly as it appeared. This happened so infrequently that I was always surprised when it showed up, so infrequently that I could never quite pinpoint what was causing it. That is until one day late that November when the rash cropped up, worse than ever before, after enjoying a blueberry smoothie for lunch at work. I remember vividly sitting at the piano in my classroom, with a room full of first graders, terrified that my throat was going to close before I finished teaching "Pavo, Pavo, Turkey Game". Once the wee ones were safely out of the room, I hauled ass down to the nurse and requested a benedryl (me: "Sue, I think I'm having an allergic reaction." Sue: "I'll say!"). That afternoon, I finally called an allergist and set up an appointment (P had been nudging me for months to do this....).
Due to insurance company nonsense (what the hell else is new there, eh?), I had to visit my GP first before going to the allergist. That appointment went something like this: physician's assistant (who would eventually almost kill me): "What's going on?", me: "I break out in a rash every time I eat blueberries", physician's assistant (who would eventually almost kill me):"OK, here is your prescription for the allergist.". Done. Never examined me, no blood test, nothing. Just sayin' (that may be the hindsight talking).
A few days later, at allergist appointment, going over my symptoms etc. etc. she was BAFFLED. No lie. I was informed that allergies to blueberries are quite rare, that it was strange that I didn't have the itchy rash in my mouth and other tummy nastiness that evidently goes with a berry allergy, it must be something else. She performed one of those prick tests anyway (with the trillions of allergens dropped onto pinpricks on my arm) to see what I would react to, blueberries (and strawberries and raspberries included). Obviously I was NOT allergic to anything (except tobacco...). SOOOOO, a blood test was ordered. She suspected that maybe something autoimmune was going on.
It's funny, well, maybe not really funny, how vividly we remember things, innocuous things, that lead up to huge moments in our lives. Moments that under any other circumstance would slip by and disappear, never scratching the surface, just happening. The song on the radio in your car just before you get the call that you were hired for that dream job. The color sweater your future husband was wearing the first time you laid eyes on them. We all remember exactly what we were doing on 9/11, maybe what you ate for breakfast just before turning on the TV to see that the world had changed. I remember having that blood test done, remember going with my mother and that we ran into an old friend in the lobby on the way out. Remember being so tired that I could hardly stand while they chatted. It was a Wednesday. I remember having been so tired that week, so THIRSTY that week, that I taught holiday songs to my students sitting down. Out of breath, gulping down water, gasping for air at the end of '12 Days of Christmas'. I remember the last yoga class I went to before I was diagnosed. It was a Thursday, the night after my blood test. Daniel taught it because Justicia was away. Remember the cold, remember coming home and sitting at our kitchen table, white as a ghost and looking at Phil, feeling that something was wrong. We both knew something was wrong, but what? P wanted to take me to the emergency room. I said no. I'm just overtired. I'll eat something and be fine. We did not go to the emergency room.
I remember the next Monday, December 22nd. Sitting in the exam room at the allergist to have my blood test reviewed. I remember the light- it was fading, that early darkness of winter. My sister was waiting in the parking lot. It may sound strange but I felt that something was coming. Something big. A feeling of dark foreboding. It is difficult to share that part of this story, how could anyone believe that? But it's true. The allergist came in with my chart, opened it up to those lab results, and lost her fucking mind. THIS I remember. Apparently she had not bothered to review the results before coming into the room and lost her ever loving mind when she began reading my results. She kept repeating "Why are these so high?! I've never seen numbers this high?!". What was I doing? Sitting there. Staring in horror at her, hoping that she would stop flipping out and look at me and speak some answers. Instead, she lept up, jittery, fearful, asked who my GP was and excused herself from the room. I remember sitting there stunned. The only thing I could think to do was to text my sister and P. That text said something like "My results are abnormal. I'm scared". And I was. I could hear the allergist on the other side of the door on the phone with my GP, reading the results, repeating "I know, they're so high. You need to see her tomorrow". She finally pulled herself together and came back into the room and showed me what she was flipping out over. She pointed to my white blood cell count, which was 153. She said that was high. She explained nothing else, instead she began asking the sort of questions that would scare the bananas out of anyone, let alone someone who just watched their doctor lose their shit. "Have you had weight loss without trying?" yes, 13 lbs., but I go to yoga five days a week! "Tired?" yes, but I'm a first year teacher! "Frequent infections?" yes, but I work in an elementary school..."Are you having night sweats?" yes...."Unexplained bruises?" yes.....fuck. I knew. Somehow, deep down, I knew once she got to those last few questions. She informed me that my GP would be calling me and wanted to see me ASAP, meaning the next morning. She stressed that I NEEDED to see my GP the next day. It was imperative. Shaking, terrified, I left and climbed into the car with my sister (I think I actually made a follow up appointment...whoops, never kept that one).
Driving back to my apartment that night, panicking, crying, I called my Dad. Told him what happened, "Dad, she said my white cell count is elevated", Dad: "Well, that could mean an infection, what was it?", me: "153?" (I didn't know that normal is 4-12), Dad: "That's...high." Then he quickly got off the phone (he was at Longwood Gardens with my Mom and Nan). Now I know that he knew right away, Mom says that he became very quiet. He called me back and asked all of the same questions the allergist had asked. He was calm. He asked when my appointment was for the next day and I said I didn't know, they were going to call me in the morning and get me in. He told me he was going to take me, but not to worry, get a good night's sleep.
P and I have a friend. A friend that is our age. A friend who is a survivor of Hodgkin's Lymphoma. hearing those questions and remembering how this friend was diagnosed, we both knew. Those questions. It was all there. P and I sat in the kitchen that night, avoiding the laptop, trying to convince ourselves that it couldn't be cancer. Just couldn't be. Lupus maybe. A fluke at the lab. An infection. Something. Not cancer.
Neither of us slept that night.
The morning of December 23rd, 2008 started with a chorus rehearsal. You see, that was the last day of school before winter break and, as was tradition at the time, the whole school was gathering that afternoon to sing songs for all of the winter holidays. The chorus was to perform, my first time directing a chorus in a 'concert' setting. Their first performance with me. I remember that rehearsal. I remember clutching my cell phone the whole time, trying to stay focused on praising those students for their wonderful singing. Struggling to hid that I was terrified and sleep deprived. I remember telling the other music teacher what had happened the evening before and that I was waiting for a call. When that call came, after rehearsal, thank goodness. The nurse said that I needed to "Just get here, we'll see you right away when you do". One problem though, I had a class to teach in an hour and was not going to be back in time to do so. Wringing my hands, shaking and holding back tears, I scoured the school for the principal, T.B. and when I found him (he was in a classroom...I had to pull myself together before opening the door to speak to him) I had the difficult task of explaining that I had an emergency and needed to get to my doctor right away. That I had a 5th Grade class coming in an hour. That I promise I will be back for the concert that afternoon. That I would call in case I was going to miss the 2nd Grade classes I also had scheduled that day. That I was so, so sorry. I was so embarrassed. New teacher, yanking the principal out of a classroom in a panic, requesting to leave and crying the whole time. Real professional. T.B., as always, was understanding and compassionate. He took my class for me (I hear that they played kick ball) and even offered a ride to the doctor. I can't tell you how much he reassured me that day.
So, Dad picked me up. Like I said, there are moments that, for whatever reason, burn themselves into the memory. Maybe it's just the light, or a smell, but they stay burned there. Dad stopped at a light just down the street from the school, next to a car wash, and asked to see the labs that the allergist gave me. He was so held together in this moment. He just looked at the papers, nodded and handed them back to me. Never indicated that anything was wrong, of the storm coming. But he knew. You can't work in Dad's field (home infusion pharmacy) and NOT know. I thank god for my father's strength in that moment and in the rest of that day (and has been all along. He was truly heroic.
Everything about my appointment at my GP's office (I am leaving his practices' name out of this because...well, you'll see) was a massive fuck up. I was ushered back to an exam room as soon as we arrived. Considering all of the panic leading up to this moment, the PA (physician's assistant) was surprisingly...clueless when he entered the room. He came in and plopped down in a chair across from me and dropped my file (labs included) onto the exam table. He then asked me why I was there. No, really. I'll repeat that: he asked me why I was there. I explained the debacle at the allergist and referred him to the labs in my chart. His reaction? Same as the allergist. I'm not kidding. The man was shocked.
(ding ding ding: Physicians reading this: REVIEW THE FUCKING LABS BEFORE ENTERING THE ROOM).
Much of the following moments are a blur of sounds, colors, feelings .... except for the moment when he turned to me and said the words "Well, it looks like you have leukemia". I can remember feeling like the air had been sucked out of my lungs. There are no words to discribe what the feeling is, deep in your chest, in your bones when you have those words said to you. I PRAY that there is no one reading this that ever hears those words. If you have, my comrade, I am sorry. in that moment, I know that my jaw dropped...well, more of a hang. That my eyes glazed. There was a small, framed picture, I don't know of what, just to the left of the exam table, that is where my eyes fell. Around the PA's rotund body, to that picture. Strange that I can't recall what the picture was...I don't even know if I said anything. My first thought was simple. "No, this is a mistake". Pure denial. Not me. Everything that you read about patients going to a place of 'No fucking way. Not me. Not now. Not cancer." is totally what happened to me. The PA then moved to sit in the chair next to me and pointed to different numbers on my lab sheet...something about blast cells...white cells...I remember his hand on my shoulder, asking me if I came with anyone. Yes, yes, my Dad is here. His name is Cliff, he's in the the waiting room. To this day, I don't understand why he left me alone to go find my father. The place was teaming with nurses. But there I sat. Alone. Crying. Convincing myself that it was a mistake. I actually thought "How do I get out of this?". Like, how much fucking sense does that make? You can't get out of cancer.
After what felt like hours, Dad and the PA returned to the room. I will never, ever forget the look on my father's face when he came into that room. He sat down next to me, I was crying. The PA started talking, explaining leukemia I think, and then got up to call what became my oncologists office for an appointment and said that their office would be repeating the blood work juuuuust to be sure it wasn't a glitch at the lab. What did I care about in that moment? What did I say in that moment? "Ok, well, I have a concert to conduct at 2 o'clock and a class to teach at 1. I may be able to get a sub for my 1 o'clock class but I HAVE to be back to work by 2 o'clock. No exceptions". I was bound and determined that if I was going to be out of work for cancer treatment and whatever else may come, that these kids did not have the memory of their teacher bailing on their first concert. Bound and fucking determined. The PA took his marching order and left to get me an appointment. Dad turned to me and asked if I was Ok. I don't remember what I said but what do I remember? Dad looking at me and saying "You're going to be just fine.". He said that several times that day. And he was right.
Now, here is why I will not reveal the name of my GP's (former GP at this point...) practice. When the PA returned, he informed me that I had an appointment on Monday morning (it was Tuesday), after the holiday, with Dr. So and So, who was an oncologist (I don't know who I was supposed to see). Monday. With a white blood cell count of 153. From labs taken a week ago (meaning that it was higher that day). He wrote me a prescription for Ativan and sent me away with a pat on the back, a sympathetic look and the promise that he would call the next morning with those lab results. In fact, even the nurse who drew my blood for the 'double-check' lab gave me a sympathetic look.
Driving away from that office, right to Rite Aid to have that Ativan filled, Dad and I sat in silence. I was crying, he looked serious. he just repeated, "You'll be just fine kiddo". We had my 'script filled. We picked up something to eat for lunch (I don't remember what) and he dropped me back off at work, though I think reluctantly, with an hour to spare before my 1 o'clock class. T.B. met me in the office and followed me back to my room with great concern on his face. I don't think he knows this, but he was the first person I spoke the word 'oncologist' to. He put his head down, I recall that he said something but I also recall that the Ativan was kicking in, and left me to myself in my room.
Those first moments of quiet, moments all by myself to let this information sink in, were horrendous. I stood in the middle of my classroom with the door closed and had an overwhelming feeling of invasion in my body. Like I could feel the cells in me. That they were dirty and I wanted them OUT. NOW. If you'll notice, I haven't mentioned telling Phil yet. If there is one thing that I had the power to change about that day (besides the whole cancer thing), it would be how I handled tell Phil what the PA had said. This was probably the worst way to tell your husband to be that you have cancer, um, ever. Well, maybe not ever, but it was pretty bad. I called him at work. At work. He demanded to know if I was sure, if they were sure. I said yes. Were they sure it wasn't Lupus. Yes. Ok. Ok. He would see me at home.
I taught those two 2nd Grade classes. We were just singing holiday songs after all, but god, it was so hard to hold back tears. It wasn't for the diagnosis that I was crying. I kept looking at those kids and thinking how much I wanted to see them in 5th Grade. Even thought about how much I wanted my own children. Even typing that I am tearful. Thinking about the kids that whole day reminds me that the world moves forward, no matter what happens in our tiny lives. Yup, I was just diagnosed with leukemia, but we have a damn concert to sing. And we are singing the hell out of this concert. I thought: It's going to be fun, you are going to remember it for being fun and NOT scary (because I can control that) and let Ms. S (as I was known at the time) handle the scary. I wanted to protect them for as long as possible. I needed to protect myself for as long as possible. Mom and Dad came to that concert (I keep calling it a concert, it was a sing along as well). Dad took pictures. Want to know what I looked like three hours after diagnosis? Here's your chance (student's faces blurred for obvious reasons):
|This is one of my favorite songs to teach. "In the Window"- they are counting the candles for each night of Hanukkah|
At the end of the concert (sing along), Phil was there. He left work, and came to pick me up. There is not much else that I remember about that day other than making the decision to call Maggie later that night. She was the first outside of my family to know. She dropped what she was doing (out a bar with friends, I think?) and came over. We sat on my bed and I told her and we cried. Somehow I ended up in bright red Santa-dog pajamas and that's the last I remember until my cell phone rang the next morning. it was the PA calling to tell me that the re-run labs drawn the day before were consistent with the diagnosis of leukemia. I called my parents. No one was surprised. It was Christmas Eve.
I wish I could say that my diagnosis story ends here. That we had our Christmas and then I went to that appointment on Monday. But that's not how things went. That isn't how things even SHOULD have gone. Here's how it went down:
Much later that afternoon, Phil and I were dressing to go to Mass at the church we were eventually married in, when my cell phone rang again. It was the GP, the actual GP (the head of the practice), calling in what can only be descibed as a fit. He asked me if I was sitting down, I said "Yes, and I know I have leukemia" (I don't think they get that response very often). He then told me that his staff (the PA) in a word, fucked up, and never told him that they, you know, diagnosed someone with leukemia that day and just filed my labs and report with the end of day papers. The GP was sorting through these reports to close the day when he came across my file. I believe a shit storm was had over there. He informed me that my white cell count had actually gone up to 188 (duh) and that this was very serious. There was an oncologist on call, Dr. Raj, who would be contacting me shortly. This was an emergency. So, there I was, in my damn bathrobe, hunched over my cell phone again. Dr. Raj called (asked if I was sitting down, same story as before) and told me that he was heading to the lab as we spoke to confirm what kind of leukemia I had. At this point, I didn't know that there were different kinds, that these things could be confirmed in labs that quickly, all I knew is that I was fucking scared. He informed me that I may need to go right to the ER, that this was very serious, but that he would call me back to let me know. If I recall correctly he even told me to begin preparing to go to the ER. After we hung up, someone from his office called ("Are you sitting down...", same story....not as nice) to say that he would be calling (no joke). After a tense hour or so, Dr. Raj called back to say that we did not need to go to the ER tonight, but that he would meet me there the next morning. I flat out refused. Was this smart? Probably not. Did he go with it? Yes. If that was going to be the last Christmas I spent on this earth, I was NOT (if I had any say in the matter) going to spend it in a hospital. After some (OK, a lot) of hesitation, he consented to 'giving' me Christmas. I was sternly told that if I became weak or began bleeding, that I needed to go to the ER immediately, otherwise, I was to be at the hospital at 8:30am SHARP on Friday (the day after Christmas). He would meet me there and I would begin treatment that day.
That evening was a tearful blur. Same motions as years past, different context. Like the earth had shifted a bit on it's axis. Everything seemed more hushed. Phil and I, because we lived together before we were married (gasp!) had made the commitment that we would NOT spend Christmas Eve together (in the same bed) until we did get married, that I would sleep at my parents and that he would sleep at his. That year, I slept on the day bed in my parent's basement and Phil slept, holding my hand, on an air mattress on the floor.
Friday morning, bright and early, we made our way up to the hospital, where I would stay for the next four days. I'll write later this week about that experience, especially now with two more hospital stays under my belt at a....much better hospital.
Why did I share this story with you? Well, mostly because I've never shared it with many of those who read this blog. Also, as a young patient I have learned that the reason that cancers in young adults go undiagnosed for so long is that we talk things away (or don't have insurance). This lump is nothing, I just banged my arm. I'm tired from work. I'm bruising from sports. I don't like the doctor. Doctors do the same. Is there an easy solution for this? No. Do I sincerely hope that my story, at some point, maybe not now, maybe not for many years, helps someone else realize that something is wrong? Hell. Fucking. Yes. Blood tests should be routine in everyone, no matter the age. Health care should be universal.
So, to close this tale, I say thank you. To my parents, to my dear, sweet husband, to T.B., to Maggie, to Dr. Raj. For saving my life. Thank you. Two years ago was the worst day of my life. So much can change in two years. And all because of hoards of people working hard on me medically, spiritually, in my friendships. Thank you.
Much (homey) love and a bright, warm, loving MERRY Christmas to all of you.