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

Teri's Heroes

No one knows how much time they have to let folks know how important they have been in one's life, so I figure I need to start recognizing them right now. I have already done so for some of my regular readers (and you know who you are) by giving tiger-eye stars as a thank you for their great support of my struggles, or of their support of others struggling on this earth. I have given most of them in person, which means a huge number of folks are still star-less. The Medical Library Association is coming up, and I will be meeting a lot of you in person - be prepared! For others that don't travel in my elite library-related circles, I have taken to mailing the stars with explanatory notes. I chose tiger-eye in the hopes that that is what my radiated mandible now looks like (yep, I am still waiting for those super powers from the huge dose of radiation, dagnabit!); I chose stars for the obvious reason that people that matter shine bright like the stars at night, and the world would be a darker place without their great deeds.
One of my heroes this weekend is Roger Ebert, who appeared at his Overlooked Film Festival after 10 months of dealing with cancer treatment http://www.accesshollywood.com/news/ah5036.shtml. His treatment and recovery are not over, and he is missing part of his jaw and has a trach, yet he overcame everything and appeared. They say having oral/head/neck cancer is bad because it can drastically alter our appearance - thank you, Mr. Ebert, for showing me and your fellow oral/head/neck cancer fighters how to take on the changes and go on living what is important in our lives!

Still learning how to cope with the after-effects of cancer treatment

I was asked by Jeanne Sather, author of The Assertive Cancer Patient, how I handle the weird looks I get when I go out wearing my mask. At her suggestion, I have included what I wrote back to her (which stretched into wondering how to handle well-meaning folks asking why I am not eating with everyone else), as well as some of her suggestions. Please leave comments with other comebacks that you think of - I am about to start traveling for my job, and figure I should have my arsenal ready, along with extra packages of unsalted sunflower seeds.
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Well, the only time I have had a really bad episode of someone staring at me and making a potentially rude comment was this week ON MY CAMPUS. I will send a message to the faculty member in charge of professionalism, offering to speak to the group of students and let them know "what's up with THAT?!" probably shouldn't be the first statement out of their mouths when seeing anyone looking a bit different on our medical center campus. (I had to rush to give a tour in the library, or I would have used the time to educate the little bugger on just what IS up with me, and how it is a miracle that I am still walking around in public.) I am working this episode up for adding it to the blog, and including links to sites that offer comebacks, if I can find any.
I dealt with the stares last summer (when I had the white burn cream all over my face) by just looking the folks straight in the eye and smiling, if they stared long enough. I guess it helps that I have been a 'booth babe' in a hundred exhibit halls, and have gotten paid to get folks to look my way - who knows. (I exhibited at medical conferences and trade shows, and still exhibit, for information resources. Used to do it for the National Library of Medicine, now do it for our library.) Rick heard a guy say something about 'you'd think they would wash the cold cream off before leaving home' to his female companion, and he just spoke directly to him that it was burn cream. I could send Rick over your way, if you need someone 6'4" and about 300 pounds to be your spokesperson, too! It helps that he is former military - gets their attention.
The other day, I was going into a church to visit the wonderful antique sale they have every year (what a cool way to raise money!), and as I entered, a small boy on the entrance stairs was staring at me, open-mouthed. I just whipped the visor off and said hello, and walked on by (if he had been older, I might have pulled the 'Darth Vader' reference on him, and said I just transported from the Death Star.) I ride my bike past a skateboard park, and know of one instance where someone watched me too long and got hit by another skateboarder, but I don't feel like I owe them an explanation. The cool times are when someone just directly asks me about the story on why I wear the visor. Usually this comes from older males, but I welcome the chance to give them a story they can repeat. I don't look as stylish as the lady in the banner on the company website: http://www.facevisor.com/ , but when I show up for meetings carrying the thing, I offer the chance for folks to try it on - and just might have sold a couple to some administrative assistants who realize this is cheaper than prescription sunglasses. I usually joke that I hope Paris Hilton will start looking like I do so it will become the fashion. Unfortunately, I am going to have to get something else that covers me up much more - my ear and neck hang out and both are getting all red again. Either this http://www.coolibar.com/01009.html , or this http://www.coolibar.com/02515.html if the visor could fit under the brim, or this http://www.stingray.com.au/merchandise/details.asp?productID=285&CatID=13 pulled up around my cheeks more and sunglasses. Just another example of all the extra coping stuff we get to learn and deal with... Maybe because I have always been large, having a few extra weird things about me hasn't really rattled me too much - I just bring them up in conversation, like showing a new piece of jewelry. When I got so bald from the radiation, I think the folks at work took it harder than I did (of course, they could see it and all I was worried about was not dripping white burn cream goo everywhere I went!!). I have my hair cut short, and the sides are different because hair won't grow back on all the radiated spots, but would really like to get it cut like Jamie Lee Curtis - just a cap's worth of hair.

My bigger issue now is the fact that I don't eat what 'regular' folks eat, and so much of what we do - meetings, celebrations, get-togethers - center on food. (Even the support group for head and neck cancer survivors offers unclaimed cookies and coffee each meeting - go figure.) I probably eat more healthily than I ever have (Kashi pilaf, sunflower seeds, blueberries - I like the way they pop in my mouth, water chestnuts, anything crunchy and not refined.) I can only get by holding a pint bottle of skim milk so long before someone comes over and asks how I liked something, or why wasn't I having any, or whatever. Trying to go back to the coping things taught in Weight Watchers has helped a bit, but usually the helpful friends I have start trying to figure out just what I could eat if I put my mind to it, and really get quite worked up about it. Maybe they have a hard time coming to the realization that I am not the same as before, or that cancer left a bigger shadow than they thought. (I have gotten used to the new 'real life', but others might take more time or won't at all.) I have no idea how I will handle the meetings at the conference - actually turned down some of the really fun things that are sponsored by vendors because the events were sit-down dinners. On the other hand, I am a very cheap date! I figure it will die down after a few weird times, when folks will start taking for granted that I am not one of the eaters they have to plan for. What I have said this week (it was National Library Week, and we had special treats and lunches for staff all week) is: since I can't taste it, eating that would be like eating at a bad restaurant, and I want good memories of our day together.
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A bit of Jeanne's message to me:
I think the straight in the eye and smile approach works well. Most
people snap to when you do that. Sometimes I add, "Excuuuuuse me?",
and then the eye contact.

But that visor, which looks pretty cool, by the way, should give you a
range of possibilities. I will think on it. Darth Vadar's not bad,
especially for kids. Maybe something like, "It's my Darth Vadar look."
And nothing more, just keep moving.

The important thing, I think, is to be prepared so that these weird
encounters don't upset you. If you collect them for your blog, that
might make it fun. I saw something on one of the bulletin boards, YSC,
I think, about what to say to telemarketers, to have fun with them.
That's not quite what you want, but some of the women were really
getting into it, saying they were going to keep the list of snappy
things to say next to the phone.
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Cheeky Librarian again, here. Please add comments on how you have handled or would handle unsettling comments about your appearance. I have no problem walking on by with my head held high (hey, I can still hold my head high - that is a triumph in itself), but would also like to pull someone's tail if I have the chance and can think fast enough. (My one and only best comeback was in the summer of 1990, when I was about 10.5 months pregnant with my daughter, and a stranger asked me in a store when the baby was due. I looked him dead in the eye and said, "I am not pregnant.", and left him with his jaw hanging.) Walking around downtown Philadelphia or in small town Nebraska with my mask on and carrying skim milk shouldn't be that noticeable, right? !

Losing a parotid means changing earrings

If you know someone that has had a parotidectomy, they may need new earrings. Now that my head has pretty much recovered from the onslaught of surgery and cancer treatment, my left ear has moved closer to the side of my head. (I try to follow Stephen Colbert's classy way he handles questions about his ear whenever anyone stares at me or asks what happened.) The good news - pierced holes lasted through radiation treatment. Bad news - I probably won't be able to wear my post earrings again, due to the functional point on them carving canyons into my neck - not much clearance on the back of the left ear. French wires are also out, for the same reason. Good news - my daughter is getting a windfall of some nice jewelry very soon!
I just saw this jewelry artist on Etsy who makes Padlock Earrings that would work:
http://www.etsy.com/view_listing.php?listing_id=5696463, and Brighton has sets that have closed wires that are pain-free. An example of a type of closed wire is here:
http://www.brightonretail.com/store/wishlist.php?m=product_detail&p=J15512, and
http://www.brightonretail.com/store/wishlist.php?m=product_detail&p=J9140.
I don't know the trade term for closed wires, but if you are out looking for a present for a friend to cheer them up, just ask at the jewelry counter at your favorite department store - the salespeople will be able to help you out.
Another item pertaining to pierced ears - I imagine that I can't get additional piercings in the radiated ear, due to slow healing in that general area. I will ask the next time I go for a checkup about the possibility of additional piercings and tattoos - I want to keep my options open.

Update - a visit to the physical therapist

Yes, I finally was able to get a referral to the physical therapist. She was the same one that spoke to the Head & Neck Cancer support group last summer, so we had a great time visiting. She observed my techniques that I had used to ease the swelling (lymphedema) around my neck, and face, and gave me some additional instructions so I will be more effective in my methods. She also gave me some exercises to do in order to keep the strength and flexibility in my upper body. Since I didn't have additional surgery, I do not have shoulder issues (I think there is a nerve that gets cut if more radical surgery has to be done, which causes shoulder droop), but I do have flexibility issues with my neck. She said that she would talk to anyone about techniques, similar to the group presentation she did last summer, so if you have had surgery, go visit with a physical therapist, even if you haven't received an official referral. I think folks don't know that the physical therapists help with scars and lymphedema, which may be why they don't keep asking to be referred to those professionals. Thanks to the information I received last summer, I have been able to keep my scars soft and flexible, and maintained a minimum amount of swelling. And since swelling hurts, I have eased my pain levels as well.

Racing for the cure in Massachusetts

I saw a news item today (April 4)about the Springfield College Physician Assistant students conducting a race to raise money for research on adenoid cystic carcinoma:
http://www.masslive.com/holyokeplus/republican/index.ssf?/base/news-2/1175672888246290.xml&coll=1. Their goal is to raise $30,000 - here's hoping they reach and exceed that goal!