Friday, November 30, 2007

Adenoid Cystic Carcinoma time capsule from the web

Over the past few months, I have been using my librarian hunting skills and web search services and archives to locate other sites that discuss in some fashion Adenoid Cystic Carcinoma. These links are either from or about specific people, or research that has gone on in the past on this disease. I am linking to these only as an archive of sorts on my blog, as a way to keep the individual stories going.

If you know of other links that I have missed, just send them on to me in a comment. Remember - I have comment moderation turned on, so I have to forward your comment to the blog. It won't show up automatically. I am on the 'net daily again now, so your comment should show up soon.

Blog: The Party's Over - by Kelly, an ACC survivor (not an active blog)
http://chinookbug.blogspot.com/

An MSN Group for Madison, a survivor that was diagnosed with ACC at age 8 in 2001
http://groups.msn.com/MadisonsACCsite/

For some reason, the journal Nature has a ton of ACC images on its site. The link is to a specific Google images search.

Dan Sullivan's story on the LoveHopeStrength site: http://lovehopestrength.com/everest/archives/category/trekkers/dan-sullivan/

William L. Heiberg's obituary at the United States Military Academy site: http://www.aogusma.org/Class/1961/Heiberg.htm

The Penny Brohn Cancer Care (formerly Bristol Cancer Help Center), a complementary therapy center in the UK, has a story in their 2004 newsletter about Robert Ross, an 8 year survivor of ACC: http://www.canceractive.com/page.php?n=444

Cristina's Wings - the Cristina M. Tolentino Trust Foundation. This Foundation was formed in 2006, and "supports and encourages children for higher education." The foundation also provides grants to schools. Ms. Tolentino's biography is linked off the foundation page: http://www.cristinatolentinofoundation.org/

An About Me page by Gervase Markham, an ACC survivor in the UK: http://www.gerv.net/aboutme.html

A tribute to Janet Trevor on The Yul Brynner Head and Neck Cancer Foundation site: http://www.headandneck.org/about/trevor.htm
This woman's story and how she lived her life was an inspiration to me when I thought they would be taking my ear. This is where I got the idea of a prosthetic ear for every holiday, folks. I hope I live my life half as well as she did hers.

Sandy B.'s story at the Massachusetts General Hospital Cancer Center site: http://www.massgeneral.org/cancer/about/environment/wallofhope/sbaer.asp
She was diagnosed with ACC in 1996.

Kathryn (Kit) Kane's story on the M.D. Anderson newsletter site: The First Step is the Hardest http://www.mdanderson.org/publications/network/display.cfm?id=DFA6463C-8FC7-11D4-80FA00508B603A14&method=displayFull&pn=8F5F110C-A318-46EA-8D0BD00E7D3770ED

Links to Parotid Tumor Information: http://www.patientsforum.com/Link4.htm
This site helped me a lot last summer by seeing other's photos, when I faced my own parotidectomy.

Terry Carson's story about receiving IMRT therapy, on the Varian Medical Systems (radiation machine company)'s site: http://www.varian.com/pinf/cps166.html

Linda A. Petersen's memorial on the Wisconsin School Music Association site: http://www.wsmamusic.org/LindaPetersen.htm . She was one fine lady. Among her many honors, the WSMA music library was named after her.

Thursday, November 29, 2007

A positive story about someone who had more surgery than I

Thanks to Siobhan, here is an inspirational story about a teen who had much more surgery than I went through, and is overcoming his limitations:

Sky High Future: Local Brain Surgery Survivor Takes Ballet, sculpts art
http://www.redding.com/news/2007/nov/27/sky-high-future/

Me? Hey, I got to drive 50 highway from Lees Summit to Sedalia last night. I felt like I was really doing something, too!

Wednesday, November 28, 2007

Still walking on air today

I am still so happy that I am around, healing up, and getting into living again. Feel like Scrooge must have felt when he woke up after being visited by his spirits. Something else the doctor said yesterday: even though the critter was not malignant, it was growing, and in his estimation, would have broken through to the dura in just a couple of months. That would have caused a whole different operation, one that I might not have walked away from just the next day, as I did this one.
I am just so glad the pain is out, and as it looks, the way is limitless for me. Not sure that all of this will spread to complete good will towards all my fellow men (found myself talking to the other drivers about their driving habits in traffic the other day - darn it!), but it goes a long way. Sending love and hugs to all of you. Here's for a differently-exciting 2008!

Tuesday, November 27, 2007

And the envelope says - no adenoid cystic carcinoma present!!

Biopsy: NOT malignant, NOT ACC; but no idea on what the critter was.
There are a couple of ways that adenoid cystic carcinoma can progress - through the lungs, bone, liver, or the head. What they whacked out of my head on November 15th is NOT ACC. It is NOT malignant. But they really don't know what it is. It was fleshy, not cacified, so not really a pearl (or at least, nothing that one would want to mount in jewelry.) The dr. commented that it had the appearance of a dermoid cyst, but those don't usually form in the bone, but in soft tissue. I didn't get to ask him, but assume that this is a 'one off', that I shouldn't get another one going. But knowing me, I just might.
NOT malignant - what a relief!! And this whole operation was not a waste, remember - the thing was growing, and my headache was pretty intense (since I haven't experienced anything up to that level of pain since the surgery, either on or off narcotics).
Ah, I just have to say it one more time - NOT malignant. Sweet.

Stay tuned - I get biopsy results today

In case I have regular readers of this blog (and I think you know who you are!!), for which I am grateful, I just wanted to let you all know that the dr's office said the results are in. I see him and his staff at noon today - my preference is to get the biopsy news in person. I am more sure of this method than ever, after receiving the MRI results over the phone last month. Hearing the words "there is a suspicious lesion" over the phone line, while by myself at home, just didn't do me too well. (The words "didn't do me too well" are a euphemism for "I wanted to throw up". ) Getting the news in person, where I might be able to ask questions (if the brain still works past any shock I may receive) is a much better method for me. You might experience different mileage with this method, however, if you should get your own cancer (no one else should get this stuff - I wouldn't mind being the last person on earth with it.) More later, folks.

Sunday, November 25, 2007

Adenoid Cystic Carcinoma in the news

A story from Ohio: Young Mother Battles Disease
http://www.springfieldnewssun.com/hp/content/oh/story/news/local/2007/11/24/sns112507grigsby.html


If the above link doesn't get you right into the article (I think this newspaper wants you to create an account - what a dirty trick!), try heading through Google first:
http://news.google.com/news?hl=en&ned=us&ie=UTF-8&q=adenoid+cystic+grigsby&btnG=Search

Friday, November 23, 2007

A Thanksgiving full of gratitude

When we sat down to turkey and fixin's yesterday, I was (and still am) so full of gratitude for all that has happened recently and during the past year. Some items from my "what I am thankful for" list for 2007:
-my friends, both with and without their own cancer experiences, who have repeatedly come to my aid with supportive emails, mood-brightening flowers and gifts that bring smiles to my face, and ready ears to listen even when they really don't want to hear more about what the heck Teri is up to these days;
-skilled and talented health professionals, who know how to make what must be done happen in the best way possible, and who understand that this particular patient really needs to know more about what happens, what to expect, and what my role will be in healing;
-this world of technology, that allows me to remain connected to people that are far away, but are only a click away through email, the blog, the phone, whatever;
-my librarian connections, who have bolstered my knowledge, and aided me with up-to-date on health information, giving me a fighting chance to successfully surmount whatever the doctors are going to throw at me next;
-the great university that I work for, which has become the center of my world for much more than the great job I have;
-the gifts of strength and humor that my mother gave to me growing up. Thanks, mom!
-my family, who sure didn't sign up for having a cancer trip with a wife and mother, but who have supported me and each other during the entire trip. I love you, Hartmans!

Monday, November 19, 2007

Watch out- post op photos













I hope to goodness that no one else has to go through a craniectomy if they have ACC, but in case they do, I have included one before and two after photos to show that it can be dealt with. (The frontal after photo shows the new body art that I have on my forehead - 2 staples). Also, please remember that no one has said yet what exactly was pulled out with my half-dollar sized piece of skull - it is still being investigated. (My money is that it has to deal with whatever my new superpower is going to be. Hopefully, it wasn't my fancy new horn bud that they removed...)
I am healing daily. Tomorrow, I get the staples in my forehead out, and the two stitches that secure the bottom of my scar near my ear. I hope to get more answers about just exactly where the titanium plate is located, and if I get to carry a "get through TSA screening free" card. I think I learn about the biopsy results in 3 weeks. In the meantime, I wish everyone a great Thanksgiving, and hope that they are able to say hello to those they are close to. I am really glad to still be kicking on this ol' earth, and look forward to more Cheeky Librarian adventures very soon. For now, I am taking things easy.

Sunday, November 18, 2007

Healing is going fine

I have a mom and a husband that are keeping me in the house and in complete healing mode, despite the urge I have to run around and see everything. Face it - I am just really happy that I am still around, considering. I was so glad to wake up and still be me.
Jeanne has asked if I remember the Girl With the Pearl [Earring], a painting by Vermeer that was also the subject of a movie
http://en.wikipedia.org/wiki/Girl_with_a_Pearl_Earring
. No, they didn't give me the pearl over my ear to take home - some wonderful pathologist is going over it with their established methods to see what the heck it is made of. I think I hear the final verdict in about 3 weeks (bone takes longer to work up than tissue). More news later, readers. For now, back to the couch! Thanks for being there, you all. I hope to get back to being a more involved member of the blogosphere very soon.

Saturday, November 17, 2007

Laying low for a few days

Hey guys - I got up this morning, fixed my own breakfast, puttered around the kitchen - did all the normal things that I refuse to take for granted. Even feeling pain is a great thing, considering what I was fearing when I went in for surgery on Thursday. Thank you all for the support, hugs, virtual hugs, flowers, e-cards (yep, I got them in the hospital!) - they all are going into the mix that will get me all healed up and raring to go. If you, like I, expected me to look like a 50's B movie star with a turban-wrapped bandage all over my head after they whacked out the pearl, we were both sadly disappointed. No bandage at all. Hardly any sign that I was even cut on, except for two staples in my forehead where they closed up the hole caused by the head frame (I was asleep, so never knew what it looked or felt like). I get the staples out Tuesday, and two tiny stitches at the base of the scar around my ear (all other stitches are the absorbing kind.) Tired - yep. Aching - oh yeah. But really really glad to be around to be tired and aching. Just talked to number one daughter, who is living in Reid, Austria (even saw her on the town webcam http://riedweb.at/webcam/#), so she knows that I am ok, and that I left the hospital not 24 hours after they took out the half-dollar-sized piece of skull and replaced it with a titanium plate. Amazing. Anyway, I am glad you were there, once again watching me take the ride and supporting me so well in your many ways. I couldn't be as well as I am without you - thank you! Now, to the couch, where Lucky the dog is warming me up a spot to snuggle on...

Friday, November 16, 2007

Teri Goes Home

Just to let you know that Teri is going home today. Great news!

Thursday, November 15, 2007

Surgery Update

The surgery went well. The lesion is removed and it had not entered the dura, which was the biggest worry. The surgeon was pleased with how things went. This was what Teri and family had hoped would be today's outcome.

Send Teri Well Wishes

Go to http://www.nebraskamed.com/patients/wellwishers/Index.aspx to post an ecard to Teri. I'm in the waiting room at the hospital, and have internet access, so will try to update the blog as information comes in. So far, its all quiet, which is good news.

Wednesday, November 14, 2007

Tomorrow is the day

I have a 10:30 check in for a noon operation to remove the alien in my head. The operation should be a couple of hours, then I have no idea about when I will be getting around after that. Watch this space for updates on any havoc I may be wreaking in the hospital hallways, as I am disguised as a mild-mannered patient instead of the Ninja Librarian!!! I may be recommending consumer health information willy-nilly before you know it.

Thank you for your prayers, emailed hugs, and beautiful flowers that have been showing up (you all are so great!). They will all go with me in memory as I get out of the way tomorrow so the surgeons can do their work.

Later, dudes and dudettes. Need to catch some sleep before the morning comes.

Tuesday, November 13, 2007

Can Adenoid Cystic Carcinoma form into a pearl?

I saw the scan of my skull today, to check out where and what the "lesion" is and what it looks like. Folks, it looks like a pearl stuck in between the inner and outer bones of my skull, right above and behind my left ear. If it turns out to be a pearl (wouldn't that be so cool?), I promise to share half the profit with the surgeons! (grin!) I had all of my many questions answered, and all of my preop lab visits taken care of today, so now I just wait for the arrival of family members and head to the hospital on Thursday for the great excision.

I know I am in great hands (literally) - both surgeons renowned for their skills and talents, even by folks that they haven't even operated on. I am more than adequately nourished, so I am ready to start overcoming the anesthesia and begin the healing process again.

The only other preparations we have yet to do is to break out the ear plugs for my glasses, so the earpiece doesn't rub on the stapled scar. For more on how to do this, if you are ever in need of wearing glasses despite painful areas, check out my earlier post:
http://cheekylibrarian.blogspot.com/2006/08/way-better-than-taking-off-earpiece.html
.

Update on the otologist and that ENG test that I took to find out why I was dizzy. He said to thank my lucky stars that I did get dizzy, since that led to the extra-hard studying of my MRI scans that have been taken over the past months, thus finding the lesion. The dizzy spells? They are gone. He said I probably had "benign..." (I didn't write down the rest of the name of what he called it), where the crystals in your ear get loose, wreaking havoc with the balance system. Evidently the crystals have settled down, since I have not had any dizziness for 3 days. I got goosebumps when the surgeon said that I wasn't even experiencing the dizzy spells in my left, radiated ear as I had guessed - it was my right ear that was causing me the trouble. (Insert Twilight Zone theme music here.) First crystals, and now a pearl - should be an interesting addition to my medical record.

Thank you for letting me know I am not alone in this. I don't want you to be left alone, either, so I have asked a guest writer to keep you up to date while I am in the hospital. In the meantime, for the next couple of days, flood me with your questions and comments. I need all the sidetracking and fact-digging I can get into as I wait for Thursday to get here.

Monday, November 12, 2007

Inquiring minds want to know...

Ok, folks, fresh off the voice mail at work: surgery will take place this Thursday around 1pm. I know the anonymous commenter left on an earlier message asked if I was 'comfortable' letting folks know the date - heck yes, as soon as I knew it, I was gonna share it! I have been running in the dark here, so have shared info as soon as I get it (I think I am supposed to get info first, but who knows these days??). At least I have time to shave the legs and maybe get a haircut. Nothing else known at this time - heading to see the otologist this afternoon, where I might hear how I did on the ENG test.

Sunday, November 11, 2007

Many questions are unanswerable. Many answers are questionable.

That was the fortune in the cookie I just opened after finding it in a cabinet (Lucky the dog got the cookie part). The message is pretty much anti-librarian-like; I want to think all questions can be answered, and the answers found are certain. On the other hand, the fortune pretty much matches up with what I am currently going through, medical care-wise. No one seems to know why I am dizzy or what will fix it; no one seems to know what the thing in my head is, and may not know much more about it after they whack it out. What a deal.
The reason the cookie was located is: today is a good day for me, and I am taking advantage of it to clean up this house a little closer to Douglas County Health Standards. Consider it the 'nesting' phase of impending craniotomy, similar to the nesting that happens before the kids arrived. I don't want to be caught by visitors with my house dirty, thank you very much! Plus I have to get it up to a higher standard, so that when it slumps a bit during recovery, I won't notice it as much.
Laughing at Spamalot and the dinner out with friends last night really did great things for me. I don't mean 'cleaning out all the closets' type of great, but catching up on all the dishes, laundry, and bills-type of great. (grin!)

Saturday, November 10, 2007

Spamalot and italian food can chase away cancer blues

...as long as you enjoy them with good friends, that is! I might have to find the soundtrack to Spamalot now - those tunes are good ones for chasing the blues away. And eggplant parmigiana, with a side of fried ravioli, yum. I felt like myself again!

Friday, November 09, 2007

After the visit with the neurosurgeon

We saw the vascular neurosurgeon today. I guess the doctor sized me up right away when he saw that I had brought one of our student skulls and the latest issue of the journal Neurosurgery, complete with 3-d photos and glasses. I am so glad I did - he referred to both resources while explaining just where the lesion is sitting and how they are going to take it out, and what parts are near and around the spot they are working on. I have forgotten most of the anatomy that he said, except that the mastoid bone will have to be drilled out a bit in addition to the outside skull piece that will be cut out (that is where the otologist comes in - evidently he is a whiz at drilling mastoid bones), and that if he can conveniently get a biopsy of the dura, he will. He said they will need to watch out for the "vein of levay". I didn't get the correct spelling for that, but he said this vein drains the left lobe, so not damaging it as they carve away will be top priority (damage could equal stroke, and the left side is where one processes words).
There won't be a cool-shaped incision - a straight up and down one will be behind my ear. He also said they wouldn't shave but a strip around where they will cut, so no wigs needed. His preference is that I will get a titanium mesh overlay on the spot, in order to keep the barrier between the skull and the dura. Evidently, if only muscle is used, it can create scar tissue that sticks to the dura, which is the only part of the brain that feels pain, resulting in headaches later. The operation should only take a couple of hours, and I should only be in the hospital for a couple of days, then home to recuperate. I shouldn't have any major limitations afterwards - he said, "No power lifting" - as if there was a danger of that happening. I asked how soon this would take place, and he said he would have his scheduler start working on it. Maybe next week, maybe the week after.
It was a lot to take in. A nap is in order.

Wednesday, November 07, 2007

It could be that Adenoid Cystic Carcinoma is back

Sorry for not updating, but it hasn't been for lack of trying. Whenever I think there is enough to report, they have ordered another test. Still no verdict, just the statement from the doctor that he "has never seen anything like it before", and that they are going to cut out part of my skull that contains "it", currently referred to as a "lesion". The critter is living in the bone marrow of my skull above my left ear. I meet with a neurosurgeon on Friday, and an otologist on Monday, then the surgery should be scheduled after that. I am all for getting this out and letting it assume room temperature so they can inspect it to their hearts' content. Not sure yet what all will be involved in the procedure or in the healing afterwards. They did mention hyperbaric afterwards if I have trouble healing (that section was radiated, so won't react normally.) I did a whole body PET scan, and the results are "no evident uptake", meaning no active tumor growth seen at this time.
I won't lose my ear (that was a big fear of mine), but I might get to wear a wig while the hair grows back. Or, if the scar is a real eye-catcher, I could sell advertising on that side of my head until the hair grows back - who knows? The surgeon said that I should be back at work after a week (but I forgot to ask him my question whenever doctors offer their estimate of healing time: how long would you take off work if you had the procedure done to you?)
I called number one daughter in Austria to let her know about all of this and that it appears everything will be ok, and she asked if I was going to get a metal plate in my head. Nope, I told her, doesn't look like it, as they plan to cover the hole with muscle. "Too bad", she said. "You could be magnetic as well as radioactive!" Yeah, and I would get to explain for the rest of my life why I was setting off metal detectors-grin!
So, I don't know if this is or isn't ACC yet. All I know is, if it is ACC, it needs to get out of there pronto, since ACC has an affinity for the dura, that part that surrounds the brain. Evidently it really likes it, and once there, doesn't like to leave. We shall show it the door, and hopefully lose the dizziness that has kept me off the roads. I can take the pain that has been increasing, and I can even deal with the dizziness, but man, I am nothing without a car and a full tank of gas to spend on a road trip! Everyone -family, friends - have been great about getting me to and fro, and I am so thankful I know so many people that like and love me (and guys, the feelings are completely mutual!). But a gal just has to have her wheels, you know?
Tomorrow I go for an ENG test . That ought to be fun. Let's hope I can walk straight after two hours of that! And I hope that it finds out the cause of why I am dizzy, if not from the "lesion".
I will post more often, now that things are a-poppin', as they say. For now, know that I am in good hands, while still serving as an educational event for our students and residents!
 
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