Monday, February 7, 2011

How it all began ENT to the ER

So back in the summer of 2010, I had developed a cough. It wasn't a bad cough, I never suspected I had a cold or anything. But I did suspect that my acid reflux was rearing it's ugly head again and I didn't want to deal with it. But as time went on the cough got worse and weirder. By the Fall I knew I couldn't ignore it anymore so I made an appointment with an gastro specialist but he didn't have an apt for months. So I took it and in the meantime I headed to my Ear, Nose and Throat doc. He was sure it was acid reflux too, he would look at my throat on camera and it showed all the classic signs. What is important to understand is my lungs sounded great (and still do apparently) and my blood was oxiginating (sp?) perfectly. And the pain I would feel from the cough resonated in my throat (and sometimes still does), so this was not an unreasonable diagnosis. For 6 weeks we experimented with different medicines, nothing worked. My cough would not go away and became more violent. Then in Dec I got a cold and my lungs truly started to ache. My ENT and I agreed that we were at an impasse and he sent me to a lung specialist.

The next week I met with Dr. Chaloub, the man who would turn my life upside down. I walked into the office coughing and I apologized to the nurse and she laughed and said, "hey that's what we're here for!" I took a breathing test, and I did terribly. Then they took a chest x-ray. Turns out this was something I needed badly. And it's hard not to play in my head when I could have gotten one sooner and exactly how soon would I have needed to get it to avoid where I am now. But it's the moot point of all moot points, so I try not to dwell.

As soon as Dr. C put my x-ray up he said "Are you here for your sarcoidosis?" and I said "huh?" And then he told me his guess based on my awful looking x-ray, that he supposed I had a lung inflammation disease that is an auto-immune disease. This seemed reasonable to me since my brother has MS. But then he said the word that would haunt me forever. He said "I don't want you to worry, this is a benign condition and I'm going to help you. You aren't crazy, you really can't breathe". Oh why did he have to say benign. He then told me that you can't diagnose on an x-ray alone, it would have to be confirmed with a lung biopsy to rule out other things. I knew that among the "other things" things was lung cancer, but honestly, whodathunk?

This was Thurs. Jan 13, Tues. Jan 18 was my biopsy, Wed. Jan 19 was my cat scan and Thurs. Jan 20 was my pulmonary functioning test, I would have my sarcoidosis results on Thurs. Jan 27th. So I began my quest to reclaim my lungs. Oh how things did not go as planned. So I have my lung biopsy on Jan 18. What a sucky test that is. They gave me a sedative and shoved a big camera down my throat. I felt it despite my "sleep" and choked like hell. So much for the "you won't feel a thing" that he assured me, I wanted to kill him. The worst part was, when I woke up, the room was silent. Dead silent. I don't doubt for one second everyone in that room saw my lungs on camera and thought "Holy shit". I'm sure they were shocked and horrified. They were looking for white blood cell like fibers, instead they found tumors and I think they knew before the labs came back.

No one said a thing to me, just sent me to recovery. I then proceeded to have a violent reaction to the sedative they gave me and I vomited for 14 hours. It was horrifying, but it was the universe letting me know things were about to get a lot worse. My lungs took 2 full days to recover from the biopsy. They bubbled, they wretched, they ached, I coughed so badly and so violently. Sophia had to stay with my in-laws for days, it was bad. The next day was my cat scan which was like a spa treatment in comparison. Then Jan 20 arrived. A full week before I was supposed to be told, I'd need a steroid for my "benign" condition, I was waiting for my parents to arrive to pick me up for my pulmonary function test which was at Dr. C's office.

That morning I was also preparing for another appointment the following week for a routine ovarian cancer screening, and I needed my genetic counselor to fax some papers to this new doctor. So I called Nancy, who I hadn't spoken to in 5 years. She was friendly, remembered me and she asked "how are you doing?" and I said "great!". That would be true for like another hour. My parents get here and my mom wants to come to the apt. too, which I wasn't prepared for, so I rushed to get Sophia snacks to eat in the waiting room. When the universe is looking out for you, it's no joke.

I went to my test and I couldn't get thru it. The technician was very concerned and says, "Do you want to see the doctor?" and I said "yeah, the breathing is getting worse". So she sent me back to the waiting room to wait to speak with Dr. C. I'm sitting with my parents and daughter and then the technician pops her head out and says, "who's with you?" That is never a good question at a doctor's office. Then she called me and my mom in, they put me in a room and we waited. I took one look at my mom and said, "This can't be good". "Don't think that way!" she answered. I was pretty sure he was going to tell me I needed new lungs actually.

They took my blood pressure, 126/81. Not bad. Then the doctor came in and he asked my mom to sit (I already was). I swear it took forever for him to open his mouth. "I have very bad news and we have a long journey ahead of us. You have lung cancer" I could not tell you what he said word for word after that, but I will say this. The worst part about bad news like this, is that there are layers. There is always another piece you need to hear and it can feel like you are rolling downhill and realizing that all your braking mechanisms are failing. So then I heard him say things like, "This is not early stage", "it's in both lungs", "if you were elderly we would only ease your pain", "you have to get to Sloan, they will probably start you on chemo next week"... One thing he said that really stuck with me was "you have 3 days to feel sorry for yourself, Monday morning you wake up and you wake up ready to fight". I needed that permission.

The funniest thought that I had while he was telling me all of this was that I was happy I was crying. I felt like, oh good, your crying, it's normal to cry. I'm glad your normal. Why that would be a concern I don't know. But I cried, I cried like hell. And I cried in my mom's arms which is a whole other kind of cry. It's a devastation. It's a how in the hell do I get out of this room cry. It's like holy shit my dad and daughter are outside waiting for me cry. I then went a little Zombie.

Ok but here's what made this day so much worse. Because my breathing was so bad, Dr. C was worried I was having a pulmonary embolism. And I had to head directly to the ER (which was a few feet away from the doc's office, so we just had to cross a street). So this was totally insane, but I digress.

So now I have to do the worst thing I've ever had to do. I have to leave this office, collect my daughter and dad and I have to walk to the ER and at some point tell my father. My mom grabbed Sophia and yelled at my dad, "take Jaime and we're heading to the ER". So my dad has my arm and we're walking and he asks "what did the doctor say?" and somehow I managed to just say it "I have lung cancer and it's bad". And dad just looked at me and said "What?!!!" almost like I was lying. Because it was just so unbelievable. And yet I managed to repeat myself and dad threw his arms around me. And we walked as a huddled mass to the ER door. I'm glad my mom was with me in the room, I would never have been able to tell both of them.

Ok this is long and I'll have to break them down. If you're reading this, you must have eye strain! ;)

Thanks for sticking with it. Maybe make a sandwich before you start another one...


  1. I think this is a great idea to document what you are going through, b/c I'm sure it will help at least 1 person go through it as well. AND, who knows..maybe you can make this into a book and make tons of money....but I digress.....:) Keep up the positive attitude and always remember what the dr told you about being ready to fight! Words of wisdom! Hey...that could be the title to your

  2. Thanks Beth! I just needed to get it out, feels good!

  3. Beth,

    From one fighter to another, I will read you every day if you fight every minute.