I hate being sick/not-sick *long*

[sirwired]

Sorry if this post rambles... I have a lot to get off my chest...

I've had a little bump underneath my left ear for a year-ish. No idea how long it had been there, as it's not that big, nor is it painful. But it's one of those things you certainly can't "un-notice" (nor stop futzing with) once you find it. I saw my doc soon afterwards and he thought it was just a swollen lymph node. I should call him again if it got visibly larger or started to hurt. Fair enough.

About a month ago I got a physical and mentioned the lump again. He thought it was nothing, but decided to send me to an ENT (Ear, Nose and Throat Doc... aka Otolarynologist), "just to be safe."

Well, after the ENT finished his "doctor reflex" stuff (looking down my throat, in my ears, etc.) he massaged the lump for about five seconds and proclaimed "Parotid Tumor." My reply: "Pa-what? Tumor?"

The Parotid gland is the name for the large salivary gland on each side of your face, just below your ear and extending down about 6cm. Occasionally, it develops a tumor. Such tumors are rare-ish (3-5 per year per 100,000 people per year, usually in people much older than I am), which is why my primary doc didn't catch it. (I'm not mad at him or anything about it.)

80% are benign, the other 20%... well, aren't. (And, for somebody as young as I am (35), the long-term survival rates kind of suck, as metastasis rates apparently don't go down over time, so the younger you are, the more likely it is something else won't kill you first.) In all cases, the only treatment is surgery, and it has to come out no matter what, as even a benign tumor can turn malignant over time. (And even after removal, even benign tumors can re-occur, which means a 2nd operation and some delightful radiation.)

20% doesn't sound that bad, until it's YOUR head the thing is in.

The rub? I won't have any idea what kind of tumor it is until the damn thing is Out. Of. My. Head. A biopsy can give hints, but aren't definitive, so I refused one, as it doesn't change the treatment plan at all. (I'm a big fan of refusing tests when the results don't have any possibility of changing the mind of the doctor or myself.) The surgery to remove the tumor is not major (as in, no really nasty scars or blood transfusions), but it is tedious (3-4 hours) because the nerve that runs your entire face (from the forehead to the chin) goes right smack through the middle of the gland. If the surgeon rushes things, I could look like a stroke victim for the rest of my life. (Even if the surgeon works carefully, common side effects include numbness of the ear, and possibly "free Botox" of the forehead or paralyzed eyelids for 6-12 months.)

The thing that has infuriated me most about the whole process is how long it is all taking. I've been able to push things along by bugging the hell out of every office involved to get things scheduled as soon as humanly possible. My surgery is scheduled for my birthday, 8/27 (or 27/8 for you European types... , about five weeks after the preliminary diagnosis. (And I've read of plenty of people who can't get it scheduled for months...) If I'd waited for the first dates I'd been offered, it would have been a week until my CT scan, another week to follow-up and confirm my diagnosis, another three weeks for the opinion from the 2nd surgeon, and who knows how long until my surgery date.

This probably sounds mean (and it's not intended to be), but if I was a woman and I had a lump in my breast, it wouldn't take two damn weeks to get a scan and get it read, even though the malignancy statistics are about the same, and the mortality stats (if it's malignant) are worse for salivary tumors.

I'm confident in the surgeon I've selected, as he's done well over a thousand of these. Which is good, as it takes a lot of practice to work around the nerves. I'm lucky he's only a half hour drive from my house; plenty of people drive across multiple states to find an experienced surgeon. (The first ENT I went to had done "a couple hundred" over his 25 years, which is actually pretty decent, if not as good as the doc I went with. But the 2nd doc's plan involves less cosmetic disfigurement, and a MUCH smaller incision.) While he's officially an ENT, (which ostensibly covers sinuses, allergies, ear infections, tonsils, etc.) he outright refused to correct my deviated septum, as he hasn't done one of those since he was a resident decades ago. All he does is lower head and neck tumors and cancers. Period. (He will be bringing in another surgeon to work on my septum at the same time, so I don't have to have another operation later.)

There's an online support group for such tumors, and they've been a little useful (they insisted I not schedule surgery until my 2nd opinion, and I'm VERY glad I followed that advice), but they don't seem like my kind of crowd when it comes to emotional support. While I feel calm-ish about it, and I don't look frazzled, and I'm sleeping ok, I can't get my mind off of it.

I don't look or feel sick, and there's a 4 out of 5 chance it's nothing more than a minor inconvenience. (It's one night in the hospital, and recovery time from the operation is all of a week, tops. The nose surgery actually has longer and more painful recovery.) I'm very lucky in that I have excellent insurance, and can afford the $3k or so in out-of-pocket costs without more than minor cringing. But dammit... I cannot stop thinking about it. I'm nearly useless at work; e-mails that would ordinarily take me a half hour to put together take a whole freaking day. Problems I'd usually be able to solve in five minutes end up getting fixed by somebody else. I'm normally really good at my job, and right now I'm certainly not.

I'd like to ask my boss (who is excellent) for the next couple weeks off (plus 1-2 more weeks after the surgery), but I'm afraid I'll just look like a worry-warting wimp. (He just went through real cancer treatment last year; he was out for about six months and needed every day of it. Luckily my employer has very generous 100% paid sick leave: "Don't be sick more than six months out of a year." And it used to be "Don't be sick more than one year out of two.")

All I need to do is hold it together for another couple of weeks, and then I can feel relieved (or deal with it if the news turns out to be bad), but I have no idea what to do in the meantime.

If you got this far... thanks for reading. Any advice welcome.

[Kaylyn]

Wow, for those things being that rare, I sure know a lot of people who've had them. One of my best friends had one that was benign, and my niece had one that either was malignant, or they put her through chemo/radiation to be extra safe because they weren't sure.

I can tell you one thing to expect, that they both experienced. There's a nerve in that area, that runs up to the ear I think, that is almost always severed during the surgery. So you'll likely have a numb spot on your ear afterwards.

As far as recovery, yeah, a week or two should be about right if it's benign. It really wasn't bad for my friend at all.

Edit: Derp, you actually brought up the nerve yourself. I'm having issues reading things lately and have a permanent case of foot-in-mouth disease. Hope they can get around it successfully...both my niece and my friend had the nerve damaged during the surgery.

[csquared]

Sounds like you have done your homework and on the way to recovery. If you can avoid freaking out for two weeks, you'll be fine.

I had the Roto-rooter thing done on my sinuses about 10 years ago. Recover was more of a nuisance. Not really painful. Just a long list of this you can't do, and you tire out quickly.

I think your boss would understand the request. You want things to move quickly and you don't want work to hold up the process. At least that is what you tell him, not that you want time off to work on your bucket list.

We'll keep our fingers crossed and you keep us updated.

[Aethian]

Maybe not ask for full time off but request to go to 3/4 duty with the understanding that your just under stress from the up and coming surgery? Also look and see if you can find a nice sit down group that is for those worried about particular surgeries or even a clergy person to have a sit down talk with. Cause it sounds like your heads buzzing with things to say but because of work you can't say them.

[Maria]

Don't really have a ton of advice, but just wanted to offer moral support, do the "you're not the only one" kind of thing. I had a different problem, different surgery (Chiari type 1 malformation for anyone who was wishing for bizarre thing to google) but I reacted similarly. Just shut down... things took hours or days to complete... all that. I got through it by talking to my brother a LOT, every day. Just had to do whatever it took each day to not spaz out, and that had to be good enough. It's all you really can do, I think. Anyway... I was going for supportive and at least marginally useful. Not sure it came across, since I have a family crisis in the background of my own mind too, but I hope the words came out right.

[Andara Bledin]

This probably sounds mean (and it's not intended to be), but if I was a woman and I had a lump in my breast, it wouldn't take two damn weeks to get a scan and get it read, even though the malignancy statistics are about the same, and the mortality stats (if it's malignant) are worse for salivary tumors.

It doesn't sound mean. Also, you're wrong.

My lady boss had a lump, and even with her advocating for herself (much like what you're doing with being pushy), it took over a month just for the biopsy (verdict: cancer), and if she had let them go with the first surgery appointment they put up, it would have been nearly two more months before it would have been removed. >_<

If she hadn't been pushy about the whole thing, they wouldn't even have put her on a preliminary surgery schedule until after the biopsy, and that would have pushed the actual surgery date back about two more months. Honestly, the entire thing was kind of insane and one of the nurses didn't seem to understand at all why the bosslady was pushing so hard for the earliest surgery slot available - yes, the bosslady complained about her attitude as being entirely inappropriate around somebody who likely has cancer.

Either way, good luck with the surgery. Hope the sucker is benign and the docs have a steady hand around that nerve.

^-.-^

[Draper Mel]

I was lucky before my back surgery, in that I was already seeing a psychiatric nurse clinician for antidepressants, so she gave me a script for 30 Xanax. I took them sparingly, but it helped to know I had them if I was really wigging out. You might ask your surgeon or regular doc if they'd prescribe something.

Good luck. It's pretty scary that they can't conclusively biopsy it. I hope everything goes well.

[Seshat]

I found a breast lump just before Christmas one year. Couldn't get the final results (fibrocystic breast disease, no cancer) until late February.


Back to the topic.

I have a lot of experience in 'being sick well'. Heck, a lot of us on the board do.

Initial advice:
Scream. Rant and rave and complain about how unfair it is. Be pissed off. Yell at the sky that you don't deserve this. Because you don't.
I'm serious. Preferably do this somewhere you won't be embarassed; or express all this emotion in some other way - some people like to hit punching bags, some people like to paint, some people play death metal music or some of the more violent classical pieces.
And yes, you will probably need to let out the pain and anger and frustration a MINIMUM of once a day, perhaps more often. This SUCKS. And there's no competition between whose disease sucks more. Noone gives out prizes for having the worse illness.

Don't feel like you can't talk to your boss about this. He may well be waiting for you to make some indication that you're ready to talk about it.
That said, keep the conversations with your boss on the professional side, rather than the mutual patient-support side: otherwise working with him might get awkward. However, you can ask him for recommendations to cancer-support counsellors or groups that helped him. Professionally, it proves that you're trying to get a handle on things - and that you respect his judgement. Practically, he just might know a good group.

I have had not one, but several counsellors tell me that they'd be worried if I DIDN'T have episodes of feeling like life has fucked me over, and of screaming/ranting fury - or utter miserable grief. And that expressing it is much healthier than having it build inside like a magma bubble in a volcano.


So.

Next: focus on quality of life.

Write down your commitments and responsibilities, including your responsibilities to your body (eg, medical appointments, taking time to eat well, taking time to exercise).

Then write down what makes you comfortable, and what you love doing.

If your life consists of a lot of column A and very little column B, change that.

This may mean relaxing your standards for, say, housekeeping. (Stay out of the 'squalor' levels, but you don't need ironed sheets and if you hand-wash dishes, they can air-dry in the dishrack.)

My painting time is considered to be as much a part of my treatment as my exercise routine or my counselling sessions; and as critical to my general level of well-being. Nothing is permitted to prevent me from doing it; in my household. You need to find something akin to that, and make it as high a priority in your life as seeing your surgeon.

[sms001]

This probably sounds mean (and it's not intended to be), but if I was a woman and I had a lump in my breast, it wouldn't take two damn weeks

Isn't it odd how different groups/areas of people can focus on different problems? Despite having been through it herself, my wife finds the high profile of breast cancer over so many similar cancers/other diseases rather odd. And yet, as Andara and Seshat have pointed out, there are countries (or even areas within countries) where aggressive self-advocacy is necessary. While I'm glad for the people in your neck of the woods that breast cancer treatment is a high priority, I'd wish for your sake that you didn't have the added level of frustration that having to push for timely treatment has no doubt brought you.

he outright refused to correct my deviated septum, as he hasn't done one of those since he was a resident decades ago.

Sounds like you really picked a winner here! Good on him.

I'd like to ask my boss (who is excellent) for the next couple weeks off (plus 1-2 more weeks after the surgery), but I'm afraid I'll just look like a worry-warting wimp. (He just went through real cancer treatment last year;

Just to add to what has already been said very well previously, everyone is different. Would you consider yourself a 'better' employee than the one who needs a month on either side of the surgery to cope? Are you a 'worse' employee than the one who works until the night before and then comes in on the Monday after? Heck no. The first might be on the very top of their game for having taken the 'right' amount of time off, the latter might be useless.
Sounds to me like you've assessed yourself and your effectiveness very well. In a sane business environment, knowing in advance what employees can and cannot carry through with is essential. You're giving your company a realistic heads-up.
(Oh, and I'd certainly call surgery "real" treatment. )

[SOAPBOX] Golden opportunity to remind people to be aware of changes in/on their bodies. Had sirwired not brought it up again, this might have gone undetected MUCH longer. You are your own best watchdog. [/SOAPBOX]

Best of luck sirwired, although from the tone of your post you won't need it. Both the physical AND mental sides of things seem well in hand for you.

[Seshat]

Just to add to what has already been said very well previously, everyone is different. Would you consider yourself a 'better' employee than the one who needs a month on either side of the surgery to cope? Are you a 'worse' employee than the one who works until the night before and then comes in on the Monday after? Heck no. The first might be on the very top of their game for having taken the 'right' amount of time off, the latter might be useless.

Noone gives out prizes for "coping better" either. But if you don't look after your emotional and physical well-being, your body will give out consequences for it.

Keep a calendar at your desk, and one in your company group calendar/with your manager/with HR/whatever your company policy dictates. On these calendars, list your medical appointments.
I'm not meaning anything too personal. They don't need to know which ones are with a grief counsellor (noting that one can grieve lost health!), and which ones are with your surgeon. Just fill them all out with 'medical'.

For post-surgery, put a greyed-out section or hashed-out section or whatever, listed as 'recovery'. List however many days completely off work your surgeon and/or his nursing staff recommend, then put at least two more weeks as the greyed-off 'recovery' period.

I'll make one exception to the generic 'medical': I'd actually list the surgery one as 'surgery'.

This gives your management team a heads-up on what's happening, in so far as it affects your job and your ability to work in a timely manner.

Also, if they expect 100% performance from you during this period, much less the recovery period, they're unrealistic and inhuman. And you can tell them some stranger from the internet said so. SO THERE!

[Der Cute]

[SOAPBOX] Golden opportunity to remind people to be aware of changes in/on their bodies. Had sirwired not brought it up again, this might have gone undetected MUCH longer. You are your own best watchdog. [/SOAPBOX]

Check your boobies
Check your boys
MONTHLY

No excuse. Period. Would you guys feel a bit "off" if you had to lose a testicle, due to a lump on it? Yeah? CHECK THEM! (or have your partner do that for you lol)

[Andara Bledin]

And don't think that you're ok, just because you don't feel sick.

The old bossman felt great, but he finally gave in and got himself checked only for everybody to be shocked that he was stage three. We lost him two years later.

The boys are totally easy to detect and treat compared to the girls, so you've got no excuse to not do your checking.

^-.-^

[sirwired]

I appreciate all the advice here... mostly I'm just here to vent.

Luckily I work for a company (and boss) that trusts employees to do the right thing. We don't even HAVE a central leave-tracking system (for either illness or vacation) for me to file forms in. (We do have an informal database, but it's primarily just so you know where to find somebody if they aren't online and not answering their desk phone. I can put "Dr. Appt." in there as much as I like.) Their view is that if you can't trust professional salaried employees to track time honestly, then those are people you just need to fire, as leave-tracking will be the least of the problems.

To help cope, this past week was my last full week before the operation; my next two weekends are going to be four-day weekends. Since I work customer support for tricky, long-term issues, this really means I'm not taking any calls for the next two weeks. I have a long-term project I can work on to keep my busy.

Emotionally, I'm holding things together, although when I see one of my doctors this week, I'm going to ask for a tranquilizer Rx, which I'll use as needed (which is not right now.) It's kind of weird; I'm not actually that anxious or tense. Rather I'm totally preoccupied with thinking about it. Anesthesia, recovery, all the follow-up trips I'm going to have to make, etc. I know it's weird to say I'm preoccupied but not stressed, but I've been really stressed out before and know the difference.

I really appreciate all the support, and I'll be sure to post again after it's over. (Or, if I have anything else to vent about in the meantime.)

SirWired

P.S. To clarify my remarks about how long things were taking. I was referring to the time it was originally going to take me to just get a scan and get it read. In the U.S. anyway, I've never heard of it taking two weeks to just get a mammogram and have it looked at. (Just like a mammogram, the CT scan I got is just to confirm it's a lump in the part they think it's in; it gives little information on if it's a bad lump or not.)

I will not have any final results until the operation is over and the lump completely removed, (which, under the original schedule would have been at least two months, if not longer.) To top things off, it'd normally be an extra week after the operation to get final results, but my surgeon did time as a pathologist also, so he'll check it out himself while I'm still under the knife. If it looks bad, he'll remove the whole gland instead of just the tumor.