Yesterday was infuriating. I was so shocked, frustrated, confused, stunned? I don’t know which emotion of those I was feeling, I was practically numb with too many. All of the above emotions, I suppose?
We were driving to the infusion appointment that is more than an hour away from where I live, when I got a phone call from the Oncologist’s Office saying:
(conversation is abridged for pertinent info, leaving out most of the nastiness, random extra questions, run arounds, and being put on hold)
Nurse: You’re numbers weren’t good and you can’t do the chemo infusion.
Ummm… excuse me?
**As my Dad pulls onto the exit ramp and makes a turn**
Me: My numbers are what? What numbers? What do you mean I can’t do it today? We are almost to the clinic!
The nurse explained that when they drew my blood at the last appointment my numbers were dangerously low. That I should have known this. Since the doctor called me and left a message!
**I look down at my phone to see if I have a missed call, but the ”missed call” indicator showed none missed.**
Me: I’m sorry I didn’t get a chance to listen to that message can you please explain to me what’s going on?
Nurse: When we drew your blood. two of the three were low. Your platelet count even more dangerously so…
Me: (interrupting, oops) Platelet count, that’s what keeps me from bleeding out from a cut right? But then do I have a high clotting factor still?!
Nurse: You can’t get the infusion.
**I look up to see us pulling into the parking lot**
Me: I’m already there. I don’t understand what the problem is? I’m clotting just fine. The few bruises I got haven’t grown at all, less than usual actually…?
Nurse: That doesn’t matter. What matters is what your blood work shows. You can’t get the infusion today. You can’t get the treatment again, until we draw you’re blood, that means the infusion will be the 23rd.
Ok, hold on. First, I’d like to say that it is never appropriate to make a decision about health treatments based solely on blood-work numbers! Second, seriously, the 23rd? The day after that is Christmas eve! It’s the day we celebrate my Dad’s Birthday!? (He’s born on Xmas.) I don’t want to spend Christmas eve feeling like shit. Then, if it’s like last time in anyway, I’ll feel even worse on Christmas! What kind of asshole move is this?! I guess it doesn’t help that I don’t trust this doctor that I’ve seen only twice and seems to treat me like I am just another cancer patient rather than recognizing my scenario and bodily responses are different because I’m lupus patient and one shouldn’t consider any patient’s case to be just another anything! So why is that how I have felt both times I met this doc? Thank you very much.
Mind you, as I’m listening to the nurse’s explanations, I’m totally exhausted, have barely woken up yet, really. I’m pretty sure the adrenaline rush from what the nurse was telling me was all that I had jolting me in rather intense spurts to full livelihood. Need I say this is not a very nice way to be woken up? I think the term would be waking up on the wrong side of the bed. It didn’t matter that I kept trying to roll back to my side by being pleasant and enquiring (though more and more forcefully),this nurse was determined to take my happy resolve away. She and the oncologist were pushing me hard, apparently intent with the goal of getting me to fall off the wrong side of the bed.
And boy was it morning! Well for me it was morning. For others, in general, it was just before school starting or just after work starts. For me this was an unseen hour of the day! Don’t get me wrong I love it; am thoroughly fascinated by interactions and life that happens this time of day! I just don’t get the chance to experience it. Because I can rarely function well enough to move, let alone be in a good-morning-mood, that time of day. I mean If I wake-up in the morning before my stomach does, I puke.
I’m sad to say I let myself get frustrated. I was snapping my questions, pleading a little too. Why couldn’t we do this? Aren’t the results of my blood work going to go down with the treatment anyway? Isn’t that the point?
Nurse: Yes the numbers will go down with the infusions, but we have to wait for now because they are too low
Uhhhh Too low… I’m so confused, isn’t the point that they wanted these numbers to hit rock bottom? Isn’t the point to “reboot [my] immune-system by knocking it out completely?” Am I the only one confused here?
Me: Are my numbers borderline or am I am really that low? Cause I’m not having any symptoms to indicate this issue and my body usually reacts to bruising and cuts pretty negatively
Nurse: Well they may have been borderline so I’ll go check.
I thanked her and waited a few minutes. Thinking as fast I could what all of these things meant. Were they taking into account my typically abnormal tests results versus physical presentation of symptoms? Were they looking at my numbers with the lupus-effected factors included? Thinking, thinking, I had to understand, so I knew what questions to ask depending on the answers she comes back with.
Nurse: You can go to the center and have your blood drawn again. She says we can wait and see what the results are today
I thanked her and hung up the phone. I explained to my dad and BF what the situation was and we all went in. The nurses in this clinic are wonderful and greet me nicely. They just got off the phone with the oncologist, so they already know what’s up. They explain that they are giving me fluids while we wait for blood test results. After they have me all set up, checked in, with my IV placed, then they finally draw my blood.
What turns out to be an hour later, they come back with the results it’s gone down more not a lot but my numbers have gone down. They call the doc to see what she decides. It takes four tries and a text before the oncologist calls back. The nurses come back in to my hexagon shaped space that I’ve been assigned and express that the oncologist has said, “Absolutely, no.”
Well, there we go. I call the oncologist. I get her nurse again, great.
Me: Explain to me what’s going on please? Why can’t I do the treatment today?
Nurse: You have a low count and it’s dropped lower. That means it has a potential to drop even lower. Whch means we don’t know what your bottoming out point is. So we have to wait.
Me: What happens if it stays the same versus if it goes up?
Nurse: If it goes up, then great; if it doesn’t, then we know you’ve bottomed and we do the next treatment.
Me: After the next treatment will my numbers go down and bottom out?
Nurse: Yes, your next treatment will drop your numbers lower.
Me: So if my numbers are the same as they are today, at the end of this week, then you will do the treatment anyway? No matter what my numbers are expected to bottom out either by the end of this week or after the next treatment? Then why can’t you do the infusion today?
**I get admiring fearful looks from the nurses and technicians around me** It appears it’s new to everyone to see a doctor actually question about their medical choices they’ve made about someone else’s body. Not to mention my competence with my medical issues based on my age baffles every medical practitioner I encounter. I think watching a child stand up to a doctor’s decision was baffling in a way that made them more consciously recognize that I’m not blindingly letting someone else control my body. All I wanted was answers. I have the right to understand the medical choices being made about my body. Doctors don’t always know best. Repeat after me: “Thank you for your medical advice. I will take it into consideration while making my decision.” That is what a doctor is for. This doctor didn’t seem to understand this.
Nurse:You aren’t listening to me. None of that matters. You aren’t getting the infusion today. I refuse to talk about this anymore.
Excuse me? You refuse?
Me: Thank you. **As I hang up the phone**
Well in my defense of hanging up on her, she did say she refused to talk about this anymore more. I really had nothing nice left to say to her on that topic or any other for that matter.
I looked up at the crowd in the room, many half gapping at me. I admitted embarrassedly that I hung up on the nurse. That what she was saying was inappropriate, not to mention that I have the right to ask as many questions and get clarification where I need. I ask the clinic if it is possible to choose treatment against medical advise, out of curiosity. Turns out you can’t, because the doctor has to send a prescription in for every treatment. Ah, in the end I never really have the power, do I? They finished the paper work, took out the IV, and prepped me to leave.
So, everything about the next 6mths just got moved back more. Instead of being able to even have a Christmas or visit siblings and in-laws I’ll be sick at home. Classes will probably have to move back another semester, if not two, at the rate they are giving me each infusion. As I wipe a few tears away I head to the elevators in the process dialing the number for my rheumatologist. Maybe she’ll explain things. I ended up having to leave a message. I’m exhausted, furious, and defeated.
I guess all I can do is wait until my orders get handed down from high. I told me parents and the nurses in the clinic, if I can’t do it this week I’m tired of being pushed around and put off and flibbertgibitted with and that I won’t do it anymore. I can wait and do this treatment in a more extreme situation. The social worker tried to tell me not to make my decision while being this upset. I look at her like she is crazy. Being upset doesn’t change the situation. When I am calm the situation will be the same. I haven’t arrived at the conclusion based off of anger, why would I change my mind?
Me: I don’t change my mind lightly when I’ve made a decision.
We leave. I slept the rest of the day–missing my rheumy calling me back–too exhausted to fight this anymore that day.