Have you ever tried to tell people something was wrong, but they wouldn't listen? After a few times, you might begin to second guess yourself. You might begin to wonder if you are just being a baby or paranoid. You might begin to wonder if you really are as hysterical as they are treating you. With that comes a fear...what if THEY are right? Then you look like a hypochondriac, or a spaz, or overly dramatic. People might think you are crying wolf and will never take you seriously again.
This has been a traumatic week for me to say the least. I felt horrible all week, plagued with fevers, body nerve pain, a cough, headaches.... After going to the ER on Monday and having them tell me they could find nothing, then going into my oncologist on Tuesday and having him show no concern I was beginning to question myself.
After the episode with my Oncologist I was distraught. Not only was I horribly sick, but I just lost my doctor and had nowhere to go. I cried that whole day...like crying from the depths of my soul. I was even surprised at my reaction. On Wednesday I was still crying but angry. I called my Oncologist's office to talk to him before he left on vacation for 2 weeks. Really...you just don't do that to a patient, and I felt that he and I needed to kind of patch things up so I am not just left hanging until he got back. Being as emotional as I was, I asked his nurse to print off my last 3 blog posts and show them to him so he could know where I was coming from....then have him call me.
Well, he called back at the end of the day, and he did apologize, but it kind of felt like his mother was making him do it. He even insisted that nobody had done anything wrong. He seemed very preoccupied with the idea that I actually had a blog documenting my experience and mentioned a couple of times that the information I was sharing was very personal. He told me he had been angry, but that we would continue treatments and discuss how to proceed when he got back in 2 weeks. While I appreciated the apology, I wasn't sold on him anymore. Some people are grumpy people who you come to know need to be handled gently or a healthy distance kept....but some people are what I call Pit Bulls. People who seem very nice, but then turn and "maul" you in one surprising incident. The unpredictable, yet potentially volatile nature of a Pit Bull is something I avoid. My former oncologist, I have determined, is a Pit Bull.
As the week progressed I did find another oncologist, but couldn't get an appointment until the following Tuesday...that was on Wednesday. Now I found myself feeling horribly and frighteningly sick and I didn't have a doctor I could trust, and I still didn't know how to deal with all that was happening. I was still spiking a fever of around 101, I had headaches, I was nauseous, and I had this hacking cough, my body hurt, but nobody seemed to think any of that was a problem. So I just endured and kept throwing medicine at it hoping something would work. The fever was worrying me the most, but my oncologist had barked out that it was just a drug induced fever in our LAST conversation. I wasn't convinced...I was worried...I began to doubt myself.
I woke up each morning at about 4am feeling horrible and crying. Finally on Friday I had had enough. Either I was going to be checking into a Hospital, or into a Psych ward that day. I told Ron when he woke up and he was on it, but how? How does one go about getting checked into a hospital when you have no doctor? We went to the ER already...they sent me home with a shoulder shrug. So I began making phone calls to find someone to give me some advice, or who could write the orders. Eventually I got a hold of my original surgeon and she worked it out for me to meet with my new oncologist that afternoon, in hopes that a hospital visit might be avoided.
I like this new oncologist...she seems to listen to me. She was concerned about my fever and a little about the cough. We talked for a while about new treatment ideas, then she said she wanted to do some blood tests, etc. Then I broke down and told her I just want to be admitted to the hospital. I can't do this anymore and I just need a couple days of someone else chasing my misery...someone who knows what they're doing. She said .. OK lets get you checked in. Just like that we went to the hospital and I had a new temporary residence.
Now when I mentioned I wanted to go to the hospital, I just wanted a couple of days. In a moment of reprieve from my misery the next day, I mentioned the idea of going home. They didn't laugh in my face, but told me I am way too sick for that. So here I am on Sunday night with no end in sight. They have done a gozillion blood draws, urine tests. I've had an echocardiogram and x-rays and CAT scans of my lungs. I have spoken to many doctors...pulmonologists, oncologists, infectious disease specialist. Two days later we still don't know what the problem is. Pneumonia, Valley Fever, Staph, possible bad chemo reaction (I'll say) etc. have been suggested, but no conclusion. They have even taken note of my mosquito bites and pet chickens. My CAT scans show that both lungs are cloudy all over, but mostly in the upper portion. They have me hooked up with their best antibiotics and anti-fungals and all the meds I want...if I want. I believe I am in good hands and we will get this one figured out.
So tomorrow I will go in for what is called a bronchoalveolar lavage. It is this procedure that makes me think of some of the techniques they use in Guantanimo, where they put tubes down my throat into my lungs and squirt fluid in, then they collect the fluid and run tests on it to see what is in there. I am a bit frightened. I will be under a light anesthesia...twilight they call it, and although it will be distressing, I am told I won't remember it. Hmmm....Ever choke on a little bit of water??? So if you are dealing with a traumatic procedure that makes you resist and cough while they are trying to do it, and you don't remember it when it is over...were you still traumatized??? I don't know, but I am a bit nervous...scratch that...scared. At this point...I'm ready to tell them anything they want to know.
So that's the scoop. I told you I was sick. I don't get much pleasure from saying it, but I am glad I did what I felt needed to be done. Oh...things would have progressed badly this weekend even if I hadn't insisted on being checked. I am pretty sure I eventually would have been admitted through the Emergency Room at some point.
So... I know that friends and family will probably read this and be concerned, and may even try to contact me. Right now, I need rest...something I am having a hard time getting...did I mention insomnia??? OH...forgot that...I also have a bit of insomnia...not great for a body needing some rest to heal. I need to sleep whenever I can. I am sure you understand. I appreciate all the prayers and good vibes being sent my way. I will try to update as I learn anything.