Lisa’s head/neck cancer experiences

Voice update

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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New stuff to worry about…

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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Update! It has been a while!

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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Sick AGAIN and more worrying

January 28th, 2009

I came down with a very nasty respiratory infection over the weekend - temp of 102.5 and a painful cough brought me in to Centra Care first thing on Sunday. Finally feeling better after a few days of antibiotics…getting kind of tired of being sick though! (The doctor at Centra Care had never examined a patient missing lymph nodes in the neck before - I still can’t believe how uncommon it is for someone to have this type of cancer)

I’ve also been finding that I’m doing a lot more worrying than I had been. Ever since my last doctor’s appointment when he told me that it was very likely that I’d be dealing with a second primary cancer at some point I’ve had that constantly replaying in my head. How do you prepare for something like that? Especially when it ISN’T preventable?! There is absolutely nothing that I can do to stop the possible cellular mutation. For all I know, there are cells starting their downward spiral into cancer mutation right now somewhere in my head, my neck, my lungs…brain, bones? All I can do is be vigilant and catch it early.

Right after treatment I know that I worried about a recurrence - but I think that was only because the doctors were worried about that then. I was pretty fine with not worrying about a whole new second fresh round of cancer and just focusing on a recurrence. What’s the real difference anyway? Why would one be more frightening than the other? I guess there really shouldn’t be any real difference - the treatments would be the same. The outcome would be the same. The only real difference seems to be that the tumor location might be different. So - a recurrence would be what they would call a tumor growing at the surgical site of my amputated tongue or somewhere on the left side of my neck where the cancer was growing - but a second primary could show up anywhere? It would be a squamous cell carcinoma (the same TYPE of cancer) and would show up somewhere you’d expect to see a squamous cell carcinoma show up…

I really hate that every time I cough I think about cancer - especially while dealing with a respiratory infection. I hate that every fresh sore in my mouth (and I get plenty thanks to xerostoma from radiation damage) has me peering into my mouth with a flashlight in a darkened bathroom every couple of hours to see if it has changed. I hate that no one knows why I am in this boat - and why other young patients (particularly female young patients) are showing up when up until very recently only men in their 70’s with a life time history of whiskey drinking and cigar smoking has this form of cancer. I hate that there will probably not be any answers to that last question because there aren’t even enough patients out there in my demographic to do a good epidemiological study.

GRRRRRRRRRRRRR………

Well - enough ranting for today. At least I’m feeling better today and have energy to rant!

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Feeling better

January 2nd, 2009

My mouth pain has subsided - only a few minor spots left that hurt now. Phew! That was not fun! I have learned valuable lessons from this experience.

1. Stay healthy at all costs.
2. If I feel the slightest twinge of pain in my mouth, call the doctor and get on some Acyclovir pronto.

I wish the surgeon hadn’t talked with me about the possibility of a second primary cancer popping up. I typed “second primary cancer” into a search engine and got myself depressed. I was starting to feel pretty cocky and like this was all going to be behind me soon - but looks like I’ll be having to worry about a new cancer of some type forever. Not thrilled about that at all.

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Had my oncology visit…

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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Absolute agony…

December 29th, 2008

Last Sunday I spent time with my niece who happened to have a slight cough. The next day I woke up with a raging sore throat, and figured that I had caught her cold. I knew that I was still immunocompromised and therefore very susceptible to infection. Well - now I wonder if I did catch her cold or something else entirely is going on. Since last Monday, I have been in absolute agony. My throat hurts, my mouth is now entirely engulfed in nasty sores all over the place - roof of my mouth, all over my tongue, sides of my cheeks - every place I can see inside my mouth is affected - I can’t eat, I can’t drink…I am probably the only person in the world who lost weight over Christmas. I can barely sleep - the pain is keeping me up all night. I feel like I felt back when I had radiation and was requiring all kinds of heavy duty opiates to cope with the pain. Even brushing my teeth sends me through the ceiling - hurts like hell. I don’t know why I have mucositis/stomatitis right now unless my immune system is really, really compromised. I just hope that when I go see the oncologist on Tuesday am that he’ll tell me that it is a bacterial or fungal infection that can be treated with drugs so that it will resolve quickly. I’m very, very grouchy. Pain sucks. I don’t think there is anything in the universe worse than having mouth pain. It is persistent, every motion of my tongue sends new waves of pain cascading through me. Talking isn’t fun, eating damn near impossible, swallowing pain medication IS impossible (I tried - couldn’t get pills down my throat no matter how much water I used or how much effort I exerted - my throat is already narrowed because of the damage, but the additional swelling and sores has nearly closed my throat off). I’m using topical anesthetics - but that is barely cutting it. Frankly - the tumor in my mouth didn’t hurt this bad. Radiation burns did - and this does seem so similar. I’m wondering if it is possible that the radiation from the CT scans done on Tuesday aggravated whatever was going on - after all - I’ve had my life time radiation exposure limit and then some. Maybe my tissues can’t handle any new radiation at all?! Don’t know - but do know that I need this resolved soon. I’m crawling out of my skin trying to cope. I hope I have some relief soon.

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No Radiation Oncology appointment

December 15th, 2008

My RO’s office called to say that he couldn’t see me on the day my appointment was scheduled for as he was going to be out of town. I made this appointment months ago and intentionally picked the first appointment of the day. They offered me an appointment in the late afternoon the day before - but I said “no way!” I’m NOT going to spend my entire afternoon in a waiting room at MD Anderson. I told them that I would talk with the surgeon on the 30th and ask him what his feelings were on follow up with the RO. I frankly don’t see what that appointment would have done for me, other than that I had planned to ask if he wanted to scan my lungs while scanning my head/neck. Now I’ll just have to wait until the end of the month to discuss it - perfectly fine by me!

I would really like to have fewer appointments - so this actually makes me happy.

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Getting nervous…

December 10th, 2008

It is getting close to that time again - time to make the oncology appointment circuit. I’ve been doing great with keeping cancer recurrence thoughts and fears at bay, and feel very fortunate that I haven’t needed to go in for an unscheduled appointment since my last visit. But, the fear and worry is starting to creep back in as I see the dates glaring at me from my very full calendar. The biggest concern that I have been pushing away from my thoughts over the past months has been the cough that I have - several times a day I cough up some very thick phlegm. Probably nothing - but the knowledge that metastasis to the lungs is possible and a second primary in the lungs is also possible is difficult to ignore. This time around I’m only supposed to have my head/neck scanned, but I’m going to be seeing the radiation oncologist one week before my scheduled scans. I’ll ask him if I should be worried about the cough and whether he should add a chest CT while we’re at it.

Here’s the line up: next Thursday morning - radiation oncology.
Dec. 23rd - CT scans with contrast
Dec. 30th - surgical oncology and the results of the scans.

Hopefully I’ll be starting the new year with no new concerns. I’m pretty sure that I’m doing just fine - guess it’ll be good to have confirmation. Still nerve wracking though - I hope that as time goes by those fears will be lesser and lesser. I remember when I had the scare over the summer and ended up with another tongue biopsy - I was incredibly scared. This is only a minor worry…

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Speech comment sets me back…

November 26th, 2008

OK, I was feeling very confident with my speech ability. Weeks and weeks have passed by since I last felt self conscious about how I talk. I teach student after student without anyone asking me to repeat myself - and they all seem to grasp the material well and pass their tests with flying colors. Granted I noticed some trouble when I was vacationing in N. Georgia and people seemed to think I was speaking a foreign language - but then again, I couldn’t understand their accents very well either!

Last night I was out to dinner with friends and some of THEIR friends - a couple I met one time about 6 months ago. My friends were commenting on how well I’m doing with my speech (which instantly raised red flags in my head - after all - if you have to comment that I’m speaking well, chances are pretty good that something about my speech made them notice and remember that I have issues with speaking!). I innocently asked a question about what they would think if they didn’t know me before - would they notice a difference? Their friends chimed in to cheerfully say that they would assume that I was hearing impaired.

Hearing impaired?! Geeze!!!!!!! I know my speech isn’t perfect, but hearing impaired?! Do I really sound hearing impaired? Everyone at the table seemed to agree…I was left stunned and have been thinking about that comment ever since. It really doesn’t help that even my husband agreed.

Here’s the deal - I want to forget what happened. I want to go forward without strings pulling me back. I’m not happy with the idea of just accepting my “new normal” - I don’t want there to be anything wrong with me. Period. I don’t want to have a speech deficit. I don’t want people to think I’m hearing impaired. (no wonder people start talking slower and louder around me! LOL - guess I should have put two and two together sooner!) I don’t want people from the Appalachians and any Spanish speaking country to be completely unable to understand me.

I feel like I’ve been set back to where I was mentally a year ago - when I felt very insecure, apologized for my speech anytime I talked with someone, couldn’t imagine being able to practice nursing or health education (how would patients be able to understand my instructions?!). I had gotten over that - even ended up opening a business that does nothing but health education and public speaking engagements. Will I choke up at my next big class? Will I go back to apologizing and drawing attention to my impediment? Grrrrrrrrrr.

On a brighter note - my thyroid treatment seems to be working - I’ve opted to try a concoction of herbs and naturally occurring substances in the hopes of avoiding taking prescription drugs manufactured in a lab. I was skeptical at first, but seeing improvement in my symptoms is making me a believer. The negative is that I’ll have to be careful about planning ahead to make sure that I don’t run out of my medication because it took the compounding pharmacy about 4 days to get the medicine prepared and to my doctor’s office for pick up.

Thanksgiving is tomorrow - the turkey is already brining. The two meat eaters in my family will hopefully enjoy it! I’m looking forward to the stuffing, cranberries, squash (still not sure if I’m doing acorn or butternut), and pumpkin pie. I’m eager to start decorating the house for Christmas this weekend. I couldn’t quite wait until after Thanksgiving like I normally do - I did make a wreath for the front door today. It turned out quite well - even with all of the help I received from my feline friends. They were quite impressed that I was playing with yards of beautiful ribbons and jumped right in to assist. They were too cute…

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Lisa’s head/neck cancer experiences

Voice update

New stuff to worry about…

Update! It has been a while!

Sick AGAIN and more worrying

Feeling better

Had my oncology visit…

Absolute agony…

No Radiation Oncology appointment

Getting nervous…

Speech comment sets me back…

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