August 17th, 2011
Is anyone still reading this thing?! I guess you haven’t, because there has been nothing posted in two years!
Just in case there is someone out there still interested, figured I’d send an update. Plus, I use this as a personal journal…
Anyway!
Here goes!
Cancer update: 4 years and still cancer free! Had two surgeries so far this year - the first was a biopsy of my tongue under general anesthesia to rule out cancer return suspected because of severe pain - negative! Instead, massive amounts of scar tissue were found to be the cause of the pain. My tongue was being tethered down by the scar tissue and was causing agonizing pain - could only swallow liquids for quite some time. Had a major surgical intervention to remove the scar tissue, a bit more of my tongue, and reconstruction down with a skin graft from my thigh. That wasn’t fun, but the pain got immediately better. I healed pretty quickly, and I’m back to “normal!”
Work: I took an Executive Director position for a major national home health company and now supervise all Orange, Osceola, Seminole, Polk, and Brevard operations, business development, and sales for multiple branches/licenses. I love what I do, but this 24/7 job is REALLy 24/7! No down time!
School: Last time I updated was when I made the decision to go back to get another Master’s degree - I just finished the last of my course work, although along the way I decided to specialize in Nursing Informatics instead of Nursing Education. I am now working on my independent research project (building a relational database that will help me track and trend the reasons patients with congestive heart failure are re-hospitalized in order to develop a plan of action to reduce the rate of re-hospitalization from the home health setting.) I start collecting my data and building the database in September, although I’m mentally already working on it! It is really neat to see how the use of technology can really improve patient outcomes! I’m looking at a bunch of PhD programs…not quite sure where I want to apply yet. Now that I’m so busy with work, juggling home, work, and school has been very challenging, so I need to find a flexible program.
So happy to be able to report that I’m alive and well four years after cancer - looking forward to my fifth year!
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October 2nd, 2009
The oncologist wasn’t too concerned about the “suspicious spot” - so I’ll go back in a month to have it looked at again. Needless to say, I’m quite relieved! I just wish the roller coaster ride would end! I hate that I always have to worry about this stupid disease…
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September 29th, 2009
Just when you think it is safe to put cancer behind you, the world of oncology seems to keep a firm grip, yanking you back into the reality that a diagnosis of head and neck cancer means constant worry and vigilance.
A month ago I was in for my routine CT scans and oncology visit. Everything looked good, and I was given my next appointment for 4 months later. I had hoped that for once I’d be able to make it a whole four months without worrying about cancer and without visiting MD Anderson. No such luck. Two weeks ago, I was in for my quarterly dental visit, and the dentist discovered a “suspicious spot” on the surgical side of my tongue. He used the Velscope on it (a device that sends light into the tissue - if the tissue lights up, that shows healthy tissue, if it doesn’t, then it is not healthy tissue and needs follow up) and the tissue in that area didn’t light up. He sent me off with an appointment to follow up in two weeks to see if the spot had resolved.
I just returned from my follow up appointment, and was told to get in to see my oncologist asap. The “suspicious spot” is still there, and it is still “suspicious.” It could be another infection (that happened last summer) or a new tumor. I’m waiting on a call back from MD Anderson - my oncologist’s nurse was going to work on getting me squeezed in over there. In the meantime, I’m remembering how excruciating the biopsy was that I had last summer. After the procedure, the surgeon mentioned that irradiated tissues don’t respond to anesthesia the way healthy tissue does. He sure had that right - it was absolutely awful. It also took about 6 weeks to heal (I’ll have to go back and look at my blog to see if I’m right about that!) because irradiated tissue doesn’t heal normally.
At this point, I’m more worried about dealing with possibly having to have another biopsy (though I don’t know that yet - maybe he’ll take a look at say that it is no big deal - I’ve got my fingers crossed!) than coping with a return of cancer. I just don’t have the time for this!!!!! I hate this roller coaster ride. I just want to wake up from this wretched dream and find out that the past two years were just one big nightmare.
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July 13th, 2009
I had my speech evaluation today - a rather unpleasant examination of my vocal cords showed that they are not moving together, which is causing my hoarse/fatigued sounding voice. The great news is that there is absolutely no sign of anything malignant, and my larynx looks very healthy. I worked with the speech therapist for a very long time this morning on exercises to do to try to regain my voice. I’ll need to go back several more times, but hopefully I’ll be able to get my old sound back.
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July 1st, 2009
I did see the oncologist last week about my hoarse and gravelly sounding voice. He put me on steroids and is sending me for a new speech evaluation. He didn’t seem pleased with my new sound. I have CT scans scheduled for next month, got my fingers crossed that there won’t be any visible changes there. Unfortunately the earliest I could get in to speech therapy is mid-July, about two weeks from now. I kind of sound like Rachel Ray - my voice goes in and out and gets very raspy. I’m looking forward to seeing my speech therapist as it has been a while since I last saw her. I’ve been wanting to talk to her about coming up with a creative way to get a “k” sound out. Since I can’t push my tongue up against the top of my palate anymore, it is very tough to get that particular sound out. ”Cl” is another tough one. I need to start making her a list!!!!!
On a positive note though, not being able to make certain sounds appropriately has led me to be more inventive when speaking - I am really good at finding synonyms that don’t have those sounds.
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June 22nd, 2009
I hate that every time I have an ache or pain I start to worry about cancer returning…
I’m going to the oncologist on Tuesday - a couple of weeks ago I started having a fullness/pressure feeling in the back of my left ear. Around the same time, I noticed, and everyone around me has noticed, that my voice has gotten very gravelly and husky sounding. I feel perfectly fine, not like it is a cold or anything. I called the doctor’s office last week after that had gone on for about 10 days or so, and they scheduled me an appointment for a week later - this coming Tuesday. Hopefully it is absolutely nothing, but of course I’m in emotional agony hoping that it isn’t something worse. I’ve gone through all of the worst case scenarios in my head already…sure hope things don’t go that way. I never in a million years would have even been worried about these type of symptoms 2 years ago, but now my head always goes to what it could be…it had better not be….
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June 10th, 2009
I just realized that I had not updated my blog in quite some time. Actually, that isn’t quite true - I did attempt to update my blog a few times over the past months, but a virus was somehow deleting my posts. So! Here’s a stab at updating everyone on what I’ve been up to since I last wrote.
Cancer update: had my CT scans in late April - everything still looks good. My thyroid, damaged by the radiation, has started causing me a lot of grief. I never realized how important your thyroid was until it started declining in activity! Wow! I couldn’t think, couldn’t remember things, felt like I was living in a fog, not to mention the constant feeling of being extremely cold and the inability to stay asleep at night. I started on thyroid replacement hormones a few weeks ago, and thankfully my concentration has come back and the fog has lifted. I’m trying to work on improving my ability (or actually, lack thereof) to make a hard “k” sound as I frequently have to say the words “AED kit” when I’m teaching about how to use an AED. I stumble and stutter over that phrase every time. I think I’m going to have to figure out an alternate way to make the sound as my tongue just can’t touch the parts of my mouth it needs to to be successful! I’m also frustrated that I can’t whistle to my bird friends in the yard or cluck to my kitties anymore, but it sure would be nice not to have to stumble over everyday sounds! All in all, I know that I sound pretty durned good for someone with 1/2 of a tongue, but the perfectionist in me gets flustered when a word doesn’t come out sounding exactly right…
Business - busy as anything. On Target Web Solutions has been doing a fantastic job marketing my health education business!
School - I went back to school! I decided that I needed something to focus on other than worrying that cancer will show back up at any moment, so I decided to pursue a second Master’s degree on the way to getting a PhD in Nursing. My first degree is in Health Care Administration, but to get into a PhD program, I need a Master’s in Nursing. Soooooo…I’m once again a grad student with my nose in the books (or these days, pointing at the computer screen!). This summer I’m working on three big projects. I’m developing a health education curriculum in cardiac health for a remote village in the Philippines. I’m researching how the concomitant use of complementary and alternative treatment and allopathic medicine impact upon nursing care delivery. I’m also doing a non-nursing project to complete my required “depth” in a non-nursing field by taking a class in Immigrant and Ethnic Issues in America…for that class I’m researching the Greek immigration experience of sponge divers in Tarpon Springs, FL at the turn of the twentieth century. I sure have been learning a lot!
I’m not sure if anyone out there is still reading this blog, but if you are, I hope this message finds you and your family well! Drop me a comment or an email to say hello!
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January 28th, 2009
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December 30th, 2008
First - the good news - no sign of cancer.
Then - the rest of the story…
The reason my mouth hurts like heck is that I did indeed probably catch the cold I was exposed to - however, most normal people have their mouths as the last line of defense against infections. I have only radiation damaged tissue which is no longer doing its job - it has become very friable and fragile. When I was exposed to the virus, it quickly found that it didn’t need to go any further than my mouth to make itself at home. It manifested itself by digging into my oral mucosa and growing at a cheerful rate. That resulted in the open sores, raw spots, and general misery mixed with pain. What can be done?! Well - if I had called the first day it started, they could have given me some medication that would possibly have helped to keep the virus in check - but now it is too late. I’ll know for the future and won’t let this happen again! I will have to keep riding this out - he expects that it’ll last only a bit longer. He gave me a prescription for some “magic mouthwash” - a concoction of topical lidocaine and benadryl that will supposedly give me some topical relief. I’m going to hold off on using that though - it never did much for me when we tried that before during radiation and tasted vile and nasty. I’ll keep using the topical stuff I have been along with healthy doses of ibuprofen.
Apparently my mouth will always and forever behave like this from time to time depending on what I’m exposed to - the radiation damage is here to stay. I need to be even more vigilant about staying healthy.
He’s going to keep an eye on my persistent cough - my lungs will be scanned the next time around (April) as well as my mouth/neck. If I start having any additional symptoms along with the cough, I’m supposed to let him know so that he can get a chest x-ray done instead of just waiting for April to roll around.
I was a bit disappointed when I talked with him about my follow up schedule. I really expected that I would start having my appointments and scans further and further apart. Turns out I’m not that lucky. I’ll be seeing him every 4 months for years. Most recurrences happen within the first 2 years (I’m at the 18 month mark) and he’s feeling cautiously optimistic that I will be lucky enough not to have a recurrence. BUT - because of my age and lack of smoking history, he’s very concerned that I’ll develop a new “primary” cancer in the head/neck area. It was so unusual for me to get this type of cancer at my age without the typical risk factors that it is most likely a genetic predisposition that has me in this boat. He said that if I was a 65 year old smoker who had quit since treatment, he’d be confident that it was the smoking that caused the cancer and he wouldn’t need to see me nearly as frequently. Since we have no idea why my squamous cells decided to mutate wildly, there is no way to say that it won’t happen again all on its own. Hence the abundance of caution and frequent visits. That was a bit of a downer on an otherwise fairly upbeat appointment.
I’m off to go numb my mouth up!
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