My oncology follow-up... a waste of time?

Episode CXIV - treats me like a rag doll

I have come to really dread my oncology follow-up appointments. It is not because I am expecting bad news... nor good news... I think I am sick of no news.

There is nothing wrong with my oncology group. My Oncologist is a really nice guy. But being a nice guy is not enough. It is not enough to just flip through a lab result, pacify my complaints, and send me on my way in the span of maybe 5 minutes.

And even though I had multiple exams, referrals, and other concerns last visit, I was not even scheduled to see my Oncologist. I was going to see the Nurse Practitioner (NP). Before, that may have been alright, but I had no idea about it now... as I had never met the new NP. I was going to an appointment with basically a stranger, who by all accounts knew nothing of me, my treatment issues, or the multiple "recovery" complaints I have been having.

Normally I do not think I would have minded the new person. I think I was tired of going into the oncology appointments and getting no support... no options... no information. I did not feel hopeful that she was going to be any better than what I have seen.

I am sick of the looks that my side effects are weird or unusual. I know they are not, because I have read countless blogs, posts, and other social media outlets with other breast cancer survivors having similar complaints. I am not alone. I am not weird. And it is real.

I began having my "unusual" side effects during treatment. I have spent almost two years complaining and getting no answers. I have spent almost two years searching the internet for other people like me to find potential solutions. I have spent almost one year being tossed around between other specialist because they do not want to handle it or step on each other's toes. I have spent two years in some type of pain.

I do not think any one would be surprised that I felt like this appointment was going to be a waste of my time.

Waiting... just wanting it over...

The Appointment of Contradictions

I am officially renaming this wasted appointment, The Appointment of Contradictions. I am not sure if it was my complex nature or the fact I was not willing to put up with any crap, but I am pretty sure the NP does not like me.

When she walked into the room and asked, "How are you doing?" I said, "I'm alive." I have no idea why, but she was taken back. I can see we are not going to be using dark humor during this appointment.

I am always stunned at the fact that at a doctor's office they are almost always surprised if you say you are not well. I am at an oncology center... it is not exactly high on my places to be! It was as if she expected me to say, "I am amazing. I am so grateful that you saved my life that even if I had a complaint I would never say it. And plus, every one after cancer feels good."

Seriously, I have miles of complaints in my chart. I have lists of medications. I mean really, you expected me to lie and say, "I am great." I thought this was the place I was suppose to say the truth, to express problems, to find solutions. Am I foolish for thinking that we are working together in my health care?

Since I realized my sarcasm was not going to be taken well today I immediately told her I knew my blood work was fine, as I just had it checked by my family about a week ago. Plus, my blood work has always been fine... even when I was not.

So, I opted to jump right into my immediate concerns before we even addressed the continued issues.

I wanted her to examine a hard area (not sure if it is a lump, but it is something new my husband noticed) in my left non-cancered breast. I wanted her to feel a funky right armpit lymph node. And I had this new and unusual growth thing on my left forearm near where I bend my arm.

I have no idea if any of these things are real concerns, but they are changes. Let the contradictions begin!

Contradiction #1

• When the NP examined the lumps, bumps, & unusual growths she did not believe it was anything bad. She could feel the lump one way, but could not feel it when she moved my breast in another direction. The others seemed unimportant.
• She then asked me when was my last testing dates. Of course, I do not expect her to know off hand, but come on this office orders those things... look at my chart much. 
• I told her about my last exams and that my next mammogram was in June. She asked why I had not had another PET, even though the oncologist had just told me he did not think another one was necessary. 
• Then after a few minutes she completely dropped the idea of testing anything even though she had repeatedly asked me about it.
• Her final suggestion was to wait until the June mammogram.
• When I sarcastically (and to prove a point) commented that if it was cancer then it would still be there, she got slightly uncomfortable. She then was like no, if it is aggressive then waiting until June would be bad.
• Then the NP said I could either wait until June or go to the breast surgeon if my husband was really worried, as she was not a breast specialist...
• So... wait til June? contact the breast surgeon? watch it and see? I still do not know what to do?

Contradiction #2

• When I complained about my crazy medical appointments and weird side effects, the NP seriously looked at me and said, "but, you were doing so good."
• Holy Moly... has she even read my chart? I know this was our first meeting together which means she assumed I was great or obviously got me confused with another patient. I have been complaining every visit since sometime during chemo treatment. I do not throw a huge fit, but I do let them know how badly I have been. And they have sent me to a number of specialists - implying that maybe I am not doing well.
• Then came another kicker... she said, "well, you had these symptoms prior to treatment... right?!?!" No. 
• Again, has she even looked at my chart.

Contradiction #3

• When I complained about all those side effects a few minutes ago, I also mentioned the insane cost of prescriptions I was know stuck with since treatment.
• The NP calmly and seriously asked me, "well, don't you have insurance?"
• I think I might have given her a, WTH look... even with insurance my prescriptions are crazy expensive. Should they not be concerned with that? I mean the idea that all that expensive cancer treatment has led to expensive post-cancer treatments... 
• And maybe you should work on your bed-side manner...

Contradictions #4

• During previous appointments I have asked the oncologist if the side effects I currently have are due to Tamoxifen. This was something I have questioned since I started taking hormone therapy. He assured me that it was not and almost laughed at the idea.
• Then the NP asks me, "have you ever thought that it might be the Tamoxifen?"
• I almost fell out of my chair. I am now wondering if the oncologist and NP are even on the same page or work for the same place. I am completely confused. 
• But since she mentioned Tamoxifen, I had to ask... with all the craziness and illnesses and side effects I am considering getting off of my cancer meds... 
• You would have thought I said something horrible. She was like "NO, you can't!"
• I was like, "I can. You may just not recommend it."
• She of course looked over my actual breast cancer pathology and informed me that I was too high of a risk for recurrence to not take hormone therapy.
• I had to ask, "how high?"
• Seems I am "extremely high". But, wait... she did just tell me to wait on that potential place in my boob? I am total confused.
• Then she mentioned that I could have a hysterectomy to change to a different hormone therapy. I am still on the 10 year plan no matter what, but I could try something else... even though they all do the same thing.
• Of course nothing is that simple. She then went on to say that if I do that I will have to come back to the cancer center every 6 months to get a injection because that medicine causes your bones to thin. 
• Not only would I have to pay for more medication and doctor's appointments, I would have additional pain in the butt treatment... does this ever end?!?!

Contradiction #5

• Then the kicker, the one that always annoys me more than probably any other thing that happened. Apparently all my complaining and questioning and not accepting the bull-crap responses led her one of the only questions she asked me, "I need to ask about your mood?"
• Yes, she was seriously asking me if I was depressed. I should be after every thing they have put me through, but I am actually not. I mean I had laughed and joked and been a smart-ass throughout the whole appointment, but there is the assumption that if you complain... if you are dissatisfied... if you refuse to take the contradictions and call them on their crap... well, you must have a mood problem!
• I think my response was, "I am not depressed, but I am pissed off." I have been in pain for over two years and all I get is the run around. I get no answers. And if I even show any emotion other than joyful admiration for them then there must be something wrong with me. 

An irritated me...

Contradiction #6

• At the end of the visit, it was time to schedule my next waste of time oncology follow-up. I mean seriously, if I do not have an active cancer that is needing chemo or radiation why do I even have to be there. She scheduled me for 4 months...
• They had always been scheduled for 6 months. Why do I need less time, as I should be getting further out? 
• Seems I should have been coming every 3 to 4 months this whole time. Seriously, I am so confused...

In my head...

At this point, I am just grateful that I have the Vanderbilt appointment scheduled soon. I cannot imagine why, but the NP was glad too. I think she was hoping that I would not return.

I was feeling irritated. But, I think that is to be expected when your own group has ignored you for over a year and you have to advocate for yourself so much. Plus, I am not being a "nice patient" and keeping my giant trap closed. They have to be glad I am going somewhere else... then they do not have to deal with me. Justifiable Crazy Patient!?!?!

Day of the appointment and over a week later.

Not only did I leave the appointment worn out and confused and annoyed, I was beginning to bruise. They had such a hard time getting the blood out of me that they had to raise my vein. It was really gross feeling. The nurse did ask if I had water, but I actually had water that morning with my first prescription dosage of the day. Guess I need to drink more water... or I need to avoid getting a needle in my arm.

Instead of an inspiring quote...

Episode Reference: Jane Say, Jane's Addiction song