Wednesday, April 11, 2012

Juggling Act

I am so incredibly frustrated. This happens lately with each reoccurring MRI, they juggle me around, calling the week prior to change things. They change up my appointments, cancel on me, or switch me to see nurses instead of my doctors, and it's incredibly frustrating! They don't even ask! We schedule my MRIs three months in advance. My parents take time off of work, travel to Seattle to be with me, and Danny takes time off of work.

This time, at the last minute (I still consider a week to be last minute in these trying times), they called to tell me that my neuro-oncologist is no longer going to make my appointment, and that I will be meeting with his "very knowledgeable nurse." I believe there are nurses that know much more than doctors, but in the past, my experience has not been good. Each MRI appointment that was held with a nurse instead of the oncologist has been riddled with bad information. I'm sick of meeting with a nurse, then having to come back to meet with the doctor to get my questions answered. I'm done paying for multiple appointments. It's unnecessary. I only want to talk to my oncologist. If I can't meet with my oncologist, I might as well just get the MRI and review it myself. The nurses always have to refer to the doctor to get my questions answered anyway, as they are very technical - or if you recall during the last MRI review, the nurse said my brain tumor was growing significantly when it actually remained the same exact size (10 x 16 x 9). I'm done with the roller coaster of misinformation. I realize that there will be errors, that medical professions are human, but I'm not going to pay hundreds of dollars to someone who may or may not know what they're talking about.

As a patient, I am a customer. I have hired my doctor to provide a service, which is to review my MRI with me and answer any questions I might have. It is irresponsible to cancel a meeting, and contract out the job to a less qualified (although surely nice) person. This cancer patient seems to get pushed around by her doctors. I hope that I'm the only one. It's overwhelmingly frustrating, right in a time when I least need more stress.

I left a message for the nurse who cancelled the appointment with my neuro-oncologist (she did it over a voicemail no less), letting her know that, "Yes, actually, I do have a problem meeting with the nurse practitioner, it's not personal, but I've hired the doctor to meet with me and review my MRI. My family is traveling from out of town, they've reserved hotels since I can't accommodate everyone. My husband has asked for time off, and in this economy, that's risky. We anticipate these appointments and take them very seriously; this brain tumor is our whole life, everything revolves around these appointments. I realize that the doctor has different priorities, but this cancer is incredibly overwhelming and I wish we would be shown a little more respect. We are willing to meet with the doctor any time throughout the day, surely there's a few moments when he can squeeze us in and honor our appointment."

If my new (yep, he's my new guy - I've only met with him once) neuro-oncologist is too booked up to meet with me, they shouldn't have allowed him to take me on as a new patient. I realize that I'm probably annoying since I'm very hands on, and that I always come with all sorts of questions, but I take my health very seriously. I mean, think about it, I've been told that this cancer is going to kill me, that I should not have children - I'm basically in a holding pattern, waiting for the next shoe to drop. I am astounded that this is how they treat someone who is fighting for their life. Although I do a lot of research about my cancer, my options, clinical trials, western, complementary and alternative treatments, etc., I also want to tap into the brain of my neuro-oncologist to answer my questions. I have a few non-negotiables: I will not over pay, or get double billed anymore (like an appointment with the nurse just to have to make another appointment with the doctor to get my questions answered), and I will not be pushed around with appointments. If they can't meet with me then I will need to find a new doctor (of course I won't tell THEM that - who knows if they'd even care).

I was so worked up just now that I had to walk into the kitchen and try a new recipe. It's was forwarded to me from a friend, and although I've tweaked it, it still has the same bones.


Turmeric Tea
1/2 Teaspoon ground turmeric (curcumin)
1/2 Lime (squeezed)
*Add agave, or stevia if you'd like
*Add milk if you'd like

If you don't appreciate Indian food, you may not enjoy this tea, but man, I swear it is scrumptious. I'm a tea fanatic, I actually have a whole drawer full of various teas, and I'm always excited to try new stuff. This drink is special since turmeric is known to kill cancer cells. It's pretty hard to ingest enough to actually kill cancer, but if you start sticking the root or the powder in everything, it sure makes it more likely! I also took two BioPerine pills (black pepper extract). Black pepper aids in the absorption of turmeric. Some people add milk to the tea, but I don't think it needs it. Another note, you'll want to continuously stir it, as the powder settles.

Sorry, for complaining throughout this entire post. I'm frustrated that I get so worked up about this stuff. I wish I didn't care, that I wouldn't have so many questions, that I didn't need to be integrally involved in my care. I wish I could just do whatever the doctors say, and be satisfied. It certainly would be much easier. The thing is, I just absolutely can not do it. I always need it to add up, I need reasons, and I need individualized care. Each cancer fighter is dealing with a unique situation. Patients react differently to mirrored treatments. Each tumor even in the same category is different. They grow differently, the characteristics may be similar, but they manifest in their own way. It is ingrained into my being that I will not survive if I am pooped through the medical system on a one-size-fits-all conveyor belt.

I believe that someday I won't need to take these MRIs so seriously. Someday my MRIs will be an afterthought, or non-existent. Unfortunately, in the meantime, I'm probably going to continue to be the friendly, yet annoying, cancer patient.

2 comments:

  1. Hi!

    My name is Misti. I have been following your blog for quite sometime now. I am 42, a wife, and a mother of two boys, ages 10 and 5.

    I found out in Feb. 2010 that I have 3 small (think pea sized) brain tumors. At first they thought it was mets and searched my entire body via MRI and CT and mammogram and gynocological looking for a primary cancer.

    6 weeks of pure hell later, I learn that the tumors are all only benign meningiomas and that we will just watch and wait with MRIs every 6mths. Talk about relief, but at the same time I wanted to punch someone in the throat (a Dr. perhaps? any Dr. would have done just fine).

    Instead, I celebrated and have been celebrating ever since up until this past Feb. 2012. It seems I now have 5 tumors, and two of the original 3 have grown some (only mm's, but grown nonetheless). And one of the ones that has grown is located on my Pons (brain stem area) and is extremely difficult and risky to get to. So, I have been referred to the head neurosurgeon at Vanderbilt.

    That was March 14th when I was referred and my paperwork was faxed to them. They still have not gotten me in to see the new Dr. and as of today, had lost my paperwork. I have been nice about it, but that is all about to change.

    My point in this post is to let you know that I understand your frustration, at least to a certain degree. You have every right to stick it to 'em!

    I pray for you often. Thanks for you blog as it is a source of knowledge and inspiration to me and to many others I am sure.

    Thanks, Misti

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  2. Just a thought in general not really related specifically to you Jessie...as the government becomes more and more involved in our health care there will be more and more of this waiting and rearranging and seeing lower level professionals all to reduce costs. In the past health care was more individually oriented but over the last twenty years regulations and protocols have come to the fore front and we are just now realizing the personal cost. As someone who has been a nurse for 43 years and is still practicing I'm really getting concerned about what the future holds for us. There is a reason that people come here from Canada [and other countries as well] for care and it has to do with choice and waiting time...wish I had some answers..Jennifer

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