Monday, April 30, 2007

Meltdown - can information get me out of one?

I have blogged once before about a meltdown that happened during surgical prep, when all of the feelings washed over me about how terrible it was to have cancer that had been diagnosed right after I had last been in that same pre-op room, and my fears that they would find more: http://cheekylibrarian.blogspot.com/2006/11/another-day-another-medical-procedure.html .
Meltdowns, while not usual things in my daily life, have happened often enough along the way since my diagnosis last June to get me to thinking that they are part of the tide I now navigate in cancer-land. I haven't blogged about them much, but will write about a few of them here, since the emotional side of having cancer is important to know about if you are beginning the trek (or supporting someone who is). Note: these meltdown experiences seem big to me - you may experience meltdowns in your own individual way. If you are someone that doesn't have cancer and want to criticize meltdowns as a weakness, get your own cancer first and then come back to talk with me about it.

A big one happened in the car with my husband as we drove away from dropping our daughter off for one of her jobs. I waved goodbye to her, he turned the corner with the car, and when he looked back my way I was sobbing so hard I couldn't breathe enough to tell him what was the matter. Lucky for me (huh - and him), he remained silent after his initial, "What's wrong, hun?" until I had caught my breath enough to talk, about 20 minutes later when we were in the driveway of our house. In my mind, I had jumped from saying goodbye to the daughter to saying goodbye forever, and realizing all of the milestones in her life that I may end up missing thanks to cancer - her graduation, marriage, babies, calling me up on Saturday mornings like I have done with my mom for years, going shopping together, hearing about her travels and adventures, all of it gone. Facing that chasm was too much. I haven't gone back there since - but another flash of a moment will take me there again, I know.

I had a private meltdown in public nearly a year ago, when they were still poking, prodding, and ultrasounding me to see exactly what I harbored in my cheek. They were still waiting on the mumps test result (I had had the mumps in 6th grade, had been tested for presence of mumps or whatever in my blood when I had my first child in Germany, but, as I said to the doctor requiring me to have another mumps test, "All patients lie, right?") I had had a good friend go with me to the doctor visits as an advocate for me, so felt pretty confident that all was being taken care of to the limits of the present-day health care system, but I had to go back alone to ask a health professional about what to expect during the core needle biopsy they had scheduled. Since my face hurt 24/7, the idea of them sticking a large bore needle in my face while holding an ultrasound wand on top of the lump wasn't worth entertaining, even for a minute. I asked if there could be some pain medication - and I didn't care what, just something that would dull the procedure (and while we are at it, something that will help me sleep through the daily pain I was having, had been having for 3 years in varying degrees). She looked straight at me, and said, "Oh, you will do fine. You can take it." That was it. So much for asking for pain relief - or any kind of relief. I had to leave the office quickly, go outside to a bench, and ball my eyes out at the frustration of getting my needs across to one more person that didn't listen. They never did prescribe pain relief (turns out that I had to go through my general practitioner for pain meds. I learned about the correct procedure after the operation discovered the tumor, so it was pretty pointless), and since the 4 core samples they took during the biopsy completely missed the tumor and facial nerve that it surrounded, the pain was bearable.

My librarian-side took over the other day, and I decided to locate information on meltdowns and what the medical research was saying about them. My search was not very successful - maybe meltdowns are just episodes to be talked about among health professionals in the break room, not taken seriously by the health profession researchers.

Searching text words "cancer emotions" on PubMed.gov, located 4573 citations in the 17,000,000 citation database.

Searching for "emotions" at the National Comprehensive Cancer Network http://www.nccn.org , resulted in only 3 hits out of 451 documents on the site.

Searching for "cancer AND emotions" at the National Guideline Clearinghouse brought back 24 related guidelines. Some were obviously not related to my search - example: "Clinical guideline on appropriate use of nitrous oxide for pediatric dental patients". (Note to self: I wonder if nitrous oxide would help me get through my next meltdown?)

Searching for "cancer emotions" in Google resulted in 1,300,000 hits, including this one from the Mayo Clinic: http://www.mayoclinic.com/health/cancer-survivor/CA00071

Searching for "cancer emotions" on Google Blog Search http://blogsearch.google.com located 27,423 hits. I went to one blog entry at Dreamhealer's blog http://dreamhealer.wordpress.com, and found this recent interview in The Alburquerque Tribune: Alice Conant - Positive emotions benefit cancer healing process http://www.abqtrib.com/news/2007/apr/11/alice-conant-positive-emotions-benefit-cancer-heal/
A quote from her interview: "Negative emotions may not make a cancer grow, but can make it hard to negotiate the system and handle the anxiety of waiting for results of tests or chemotherapy." I am still thinking up a comment for this quote.

There were 13 clinical trials recruiting on ClinicalTrials.gov that had the words cancer and emotions in the study: http://clinicaltrials.gov/ct/search;jsessionid=DD1645BD506458B9679B9BEFFE65C3F3?term=cancer+emotions&submit=Search

Looking at MedlinePlus, the health topic: "Cancer - Living with cancer" has multiple sites that deal with the psychosocial aspects of cancer: http://www.nlm.nih.gov/medlineplus/cancerlivingwithcancer.html

Yes, I generally stay upbeat and positive, despite the fact that I am (and will eternally) dealing with side effects of cancer and its treatment - I don't want to be a whiner, or bring the party down. I know enough now to not bring up the negative side at work, since it bothers folks there so much - cancer is a non-issue, like religion or politics - just talk about the business at hand and the mission, and service to the patrons. No sweat - I can deal with those rules. But there is a journal at my bedside that holds most of the emotional side of what I have faced - not for public record, but to show my future self what levels of hell I have endured (yes, Virginia, I can indeed "take it") and will continue to fight against in whatever means I have available. And sometimes, folks, meltdowns are the ammunition of choice!

Meltdowns are the topic of some of my favorite bloggers this week, and they write about them much more eloquently that I ever will. There is an introduction to the collection here:

Cancer Bloggers Join Forces
http://www.assertivepatient.com/2007/04/cancer_bloggers.html

Assertive Cancer Patient: http://www.assertivepatient.com/2007/04/meltdowns_i_hav.html

As the Tumor Turns: Little Miss Meltdown
http://spinningtumor.blogspot.com/2007/04/little-miss-meltdown.html

Life Changing Cancer: The Meltdown That Didn't Happen http://dahlborg.blogspot.com/2007/04/meltdown-that-didnt-happen.html


3 comments:

Lynne said...

Teri -

Wow,this post is so vulnerable with your stories, and such the librarian with your research. Thanks for sharing your meltdown stories. I have had a few small moments of anticipating my funeral and felt the capacity to lose it, but could pull myself back because in the moment, I didn't want to go there. But as you point out, sometimes those meltdowns just don't give us a choice.

I'm not good at snappy comebacks, but my partner Patty is funny and can often think of good ones. I'll see if I can get her going! If she has any good ones, I'll let you know.

My best to you today and every day as you deal with the very visible effects of your cancer and treatment. Some of us can "pass" more easily and look "normal" than you can, and I can only imagine what that's like for you.

Lynne

Lisa said...

Meltdowns what a topic. I aplaud you and our fellow cancer bloggers for being so open about somehting so personal. I have always tried to hide my meltdowns and keep them private with the result that daily people go on and on about how will I am managing my illness and I sometimes just want to laugh in their face. My most recent meltdown occurred when I was told that I'd have to be back on crutches due to the radiation to my ankle.

Good luck and stay strong

Anonymous said...

Teri,
What a valuable topic. We actually had that conversation at book club last week and a former oncology nurse talked about patients seeing her in the supermarket and having meltdowns. One patient actually vommited in the store when she say the RN. I think a meltdown would be preferable! HA!! For myself it wasn't so public but working in the hospital I had a hard time going to outpatient surgery (where I had received my chemo) without feeling overwhelming nausea. That, thank goodness, has gone away.

As for snappy comebacks - how about simplyy saying "my name is Darthette - I lost my power stick".

Michlene

 
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