THE BEGINNING ASPEN COLORADO 2004
We all have our story don’t we?… and because its “our story”, somehow it has the potential to seem to be more unique or more scary than anyone else’s story. The reality is, that each one of us has a personal story about ourselves and its special and unique to us. With any cancer story, some of us go through shock, denial, grief, anger, joy, crying fits, feeling alone, and absolute terror. My story includes all of that, as I am sure that most do. I by no means think my story is more special or unique than anyone else’s experience. It just happens to be my story and I want to share it with you so you’ll understand who I am, and where I am coming from.
It started in Aspen. I went there for part of the ski season with friends the month before. My dad died unexpectedly in the middle of February 2004. It was Wednesday night, the day after Fat Tuesday. He had some kind of heart attack teaching a computer class that Wednesday night, and was brain dead on life support a short time later. My mom called to tell me the night it hap pend, but my phone was off. I listened to her message first thing Thursday morning. I was out on the first plane to Phoenix 3 hours later. I sat on the plane in disbelief, I would have never guessed the day before I would be flying down to Arizona to see my dad for the last time. It was like one day my dad was there, and the next day he wasn’t. I had no time to prepare. I remember feeling numb and just being in shock. I watched as we took him off life support the next day. I remember cutting off some of his hair just because I wanted to keep something of him with me. My mother thought it was a strange request. Nothing seemed real anyways. I didn’t feel so good and I lost weight. I figured it was because I was depressed. After the services were over, I came back to Aspen.
I skied everyday in order to forget about my loss. My “new” friends and I would take the gondola to the top of Aspen mountain. We would make up stupid games with the snow ie. like bowling with snowballs and getting points for every time we hit a tree. Stashing drinks, food and mini camping stoves in an unused area towards the top. We would have our own homemade lunch barbecues on the mountain top hiding from ski patrol. But most of the time we skied. I would go as fast as I could, with the wind running through my hair, hoping maybe somehow I would start to fly. It felt so good to feel so alive and free and it distracted me from what was really going on in my mind. I just couldn’t believe my father was dead.
While skiing non stop and way too fast, I fell really hard on my chest. I had been skiing since I was 6 years old. I have had plenty of falls. But this one was different. This was not like any other fall I had experienced before. I initially laid there lifeless in shock, trying to figure out what the heck just hap pend? Why I was having such a hard time breathing? It literally knocked the wind out of me so hard I was gasping for air, and it felt like I had really jumbled something around in my chest or insides. The whole thing felt very strange. “I must be getting old” I thought. I heard a couple cracks too so I figured I had broken some ribs. No biggie. I gathered my breath, picked myself up and started skiing down hill. Ten minutes later I met my friends at the chair lift apologizing for making them wait, and skied for about 2 more hours because I didn’t want to seem like a cry baby. I remember telling my friends what a weird fall I had and that my insides felt jumbled up a bit. Nobody, including myself, could have imagine how close I had come to killing myself in that fall.
I had some friends from LA visiting in 2 days so I just kind of tried to forget about my chest pain that was growing worse by the day. My friends came and left and the pain still was there.
Now just 7 days since the accident I noticed I was going to sleep earlier, I felt really tired, and now my whole chest hurt. I also started to get this really bizarre cough. I wasn’t coughing up anything and I didn’t have a cold, but I would just start coughing uncontrollably. I woke up one night coughing so hard and for so long, I could hardly breath. I almost called 911 but decided I didn’t want to humiliate myself in front of the neighbors.
The next day I went to an internal medicine clinic down the street. The doctor checked my O2 sats which were 77 (bad), and my pulse was 145…. which is ridiculously high. The doctor then then asked me if my neck veins were normally distended? Did I know when I had my last AIDS test? “What?” Ok this doctor was completely freaking me out.
Where was my “new” doctor going with all these strange questions? Why was my pulse so high?
We did a chest Xray. The doctor came back in and said “well you work in the health care field. Wouldn’t you tell this person to go to the hospital?” . while showing me my Xray. I took one look at that Xray and my heart sank. It looked horrid. My left lung was complete white out like I had never seen before and then the white out was somehow spread; throughout the entire chest area. Additionally my esophagus and trachea looked like they were being pushed over to the right. What the heck WAS this? All this from a ski accident? The doctor told me I had to go to the hospital immediately to get a CAT scan. “it must be pneumonia” I thought. I asked the doctor “this could all just be walking pneumonia right?” and she said “maybe, but your heart looks a little weird” My heart? What was she talking about? What could be wrong with my heart?
ASPEN VALLEY HOSPITAL
I could barely drive the one mile to the hospital… I was shaking, I knew there was something terribly wrong, but how could that be? I felt fine last month. I was a nurse.. how could I not have known there was something really wrong with me? I knew, CAT scans are not usually done for broken ribs so what was my doctor looking for?. “I can’t be sick, my daddy just died 3 weeks ago” I practically cried to myself. I started to feel nauseated. I hoped there was a reasonable explanation. Actually at this point I was hoping for “walking pneumonia” to be the explanation. All I could think to myself is “that’s pretty bad when your best case scenario is walking pneumonia”
I was admitted quickly because I saw “them. “Them” meaning, there were hospital staff waiting for me. I was completely bi passed through reception and whisked to a private room. Seemingly, minutes later, the CAT scan tech ran into my room and and announce loudly “your doctor ordered this STAT”. He placed me on a table and wheeled me down the hall at a fairly speedy clip.
My CAT scan tech was pretty intense, and ignored my lame attempts at joking. I kept thinking I might remember to tell his boss this tech needed to learn to be a little more “folksy” in front of his patients. This CAT tech was acting far too “preoccupied”. It was freaking me out.
I laid on the mechanical table, moving in and out of the cumbersome CAT scan machine, while it made these loud whirling and spinning noises. The only way I could describe the sound is if one could imagine being an atom being shot to pieces at an accelerator center. Every minute or so the CAT scan would speak to me in its weird computerized voice saying “hold your breath” , “now release your breath”. It did this about 3 or 4 times.
I was ignoring what was going on, and ignoring that I was actually participating in a CAT scan of myself. I had more interesting things to ponder about this CAT scan other than why I was having one.
As I laid there, I tried to figure out how much this machine cost the hospital, and how many machines the company must sell each year, and how much commission the rep for the CAT machine makes on each sale. I imagined all the people involved with inventing this machine, and all the people involved with making all the intricate parts that were whizzing around me as I was doing all these calculations in my head. I wondered why I had not ever questioned all of this before this moment? it was really interesting.
The machine stopped. The tech spoke through a speaker that I could “relax” now, and we were done with my CAT scan. I waited, and as I waited, I looked. I watched the faces of the two techs reading my CAT scan on the monitor through the glass partition. I saw them look at the monitor and then look right at each other, and then kind of slowly turn to look at me. That’s when I knew I was up shit creek. You see, I recognized the look on their faces. I had seen that look a million times. It was the same look my co workers and I had made, so many times before, when we realized our patient was screwed.
My head started spinning now, I knew something was wrong, very wrong. I remember the CAT scan tech immediately asked me if I had ever “had a lung removed”. “what?” What would make him think I had a lung removed? This was getting weirder by the minute. I kept trying to figure out what I did, to have caused whatever it was that was, that was going on in my body. And what WAS going on in my body?
My really pretty nurse was waiting for me in my room and as she is starting my IV, I hear her name being announced over the loud speaker. Apparently my doctor is on the phone and needs to speak to my pretty nurse “STAT”.
“What was with these people? Why is everything STAT around here?” I was an athletic, in shape 34 yr old who never got sick, yet all of a sudden everyone seems to be yelling “STAT” everywhere I go in this hospital. I rationalized “well it is a small little hospital and maybe they need to make things exciting here”.
I had “STAT” on the brain big time. I started to think about my dad. I knew they had put him through a “big” scan like the one I was in, just a few weeks before. I started wondering, while they were trying to bring him back to life, if they were yelling “STAT” with him too. I hoped so… he was my daddy and I loved him. I hoped they did everything “STAT” with him. I wished he was here with me. I was all alone in a place I had only been staying in for a short while. I didn’t need this shit.
My nurse comes back in and I could see the look on her face was not a happy one but she tried to keep my spirits up. I specifically noticed she was trying to hide that “this girl is up shit creek” look from her face while I watched her start my IV. As she tapes the IV in place, the pretty nurse tells me “Your doctor is coming over to the hospital to talk to you in a few minutes” “Great” I thought…. “Now the doctor and I have enough of a relationship that my nurse is calling her “Mine”. I scanned the room. There was no place to hide. I knew I was going to hear whatever it “was”.whether I wanted to or not… and I didn’t want to.
Five minutes later my internal medicine doctor walks in and she looks pretty morose. Everything she started saying seemed like slow motion and I could barely believe what I was hearing her say to me.
She begins by telling me I have a mass in my chest, its crushing my left lung completely, my heart is being pushed to the right side of my body and is now crushing my right lung which is why I was having problems breathing. I asked my doctor how big this mass was in my chest… “I’m not going to lie to you” she says,” Its massive”. She actually said something like she couldn’t believe I had been walking around and skiing like this. She told me me it was the size of two tennis balls in my chest. I am only 5’1 and about 96 lbs so that took up a lot of space. It took up most of my chest.
She tells me because of the size of the mass they think its lymphoma and they needed to do an AIDS test. The reason being is that it was clearly aggressive and had grown quite fast and abnormally large. I wanted to cry “Oh my gosh I might have AIDS”
I was really starting to notice how difficult it was to breath and instead of getting better, things just seemed to get worse rapidly.
I quickly went down the drain fast from there. They began draining fluid out of my lungs with a massive needle which seemed to fill up a liter container each time. You would think I would have hated it, but it at least made it possible for me to breathe better. On top of not being able to breathe, I was having circulatory problems as well. I was told I had Vena Cava syndrome (an oncology emergency) where the tumor was causing a big kink in my vena cava, making it difficult for the blood flow in my body.
Well for the good news: I didn’t have AIDS, but I did have cancer and they were having a hard time identifying what kind it was and due to my current situation. We needed to find out fast because this tumor was killing me.
Within 24 hours, I was barely coherent and felt drunk and confused. The day before my o2 sats were 77, which is pretty bad. By the this day they had gone down to 55 on room air. It was decided I was rapidly de compensating, and needed to get out of this high altitude. I was quickly ambulanced on a 3 1/2 hour drive to down to Denver.
DENVER MARCH 2004
When I arrived in Denver, I was pretty gagked out but my ex boyfriend, a surgeon, who flew in to meet me because he knew it was serious, along with my mother. I remember thinking about my dad, “did he know what was going on?” “Was I going to die the same month as my dad?” It seemed hard to believe, but it was starting to look like that may just be a serious possibility.
We did biopsies, pet scans, blood tests, the works. It seemed like close to seven days past before we could get a diagnosis. It was was some kind of lymphoma, but because it had been in my body so long, it possibly had mutated and there were some abnormalities that made the initial diagnosis difficult. Because I had the presence of some highly abnormal cells we had to send out the biopsies to 3 different facilities just to get a definitive answer.
TEN DAYS LATER IN DENVER MARCH 2004
My doctor told me I had a long recovery: 9 months of chemo, radiation, and likely a stem cell transplant. Chemo and radiation I was OK with, but “stem cell transplant” ? Why would I need that? I decided that my doctor was just throwing out all the possibilities, even the unlikely ones. I told myself I would only need chemotherapy and radiation. I didn’t seriously think about the stem cell thing being a real issue.
Believe it or not I wasn’t sad… I was thrilled because I knew I had a “chance”. Up until then I was in such bad shape that I really thought I was not going to make it out of the hospital alive . Now I knew that this would be a really good reason not to go back to work for awhile. That was a good thing wasn’t it?
WISHFUL THINKING 2004
I started to think of all the upsides to my situation. I had my mom take photos of me in the hospital bed with my oxygen on as “before” pictures because I started imagining that I would use it for an article I would write for a “fitness” or wellness magazine. I instantly imagined that I would just prance through all my chemotherapy treatments “incident free”, and that I wouldn’t even need the radiation. In fact I began to bargain I might not even have to do all my chemo, because I would work out so much and stay in such great shape I would miraculously get rid of my cancer well before anyone thought. Clearly none of my imaginary “upsides” turned out anywhere near what was my future reality.