Tuesday, June 26, 2007

Finally have some good answers about things

Not that it's all good news nor all bad news... but at least, I know what the doctors are looking at and understanding WHY they are treating me differently than a lot of other women that might have breast cancer.

1) the original mass, even though we really don't know what exactly it is... when it was compressed it "unrolled" or "spreadout" and cancer doesn't do that... scarred breast tissue or abnormal breast tissue that doesn't become cancer does that. So, that's why they didn't think I needed to have any kind of follow up. They verified that it still exists, they still don't know exactly what it is... nor did they really check to see if it grew. But, it's like a 1 in a Billion chance that I could have cancer where that "mass" is. The issue is that there could be cancer hiding behind the mass, but eh, what can you do?

2) The swollen lymph nodes and breast pain are probably due to some sort of inflamation... and no, they don't have any treatment other than an old wive's tale of taking primrose oil... basically, they haven't mucked around with figuring out why this happens sometimes to some women - it just does, and someday it'll stop and they don't know what to do or how to help - and haven't really bothered to figure it out yet. BUT, cancer isn't supposed to be painful, so we're supposed to ignore those symptoms when looking at my cancer risk.

3) I have a cyst about the size of a bebe pellet. It's new... it is "probably" benign. The issue is that it's tiny, and the "lump" that is in the same location is about six to ten times bigger - like the size of a nickel. Could it be cancer .. yes... is the risk high? Well, it's higher because I have four Aunts that have had cancer, but not a ton higher. Could a simple biopsy set my mind to ease? Yes, BUT, probably not a good idea. Apparently - now this is the new news. Because the lump is so much bigger than the cyst - if he did a biopsy he would probably "miss" the actual cyst and would get a false negative on cancer... which is MORE dangerous than not getting tested at all. Because if I get a false negative, there is no follow up... which is where I was a few weeks ago.

So, he does want to follow up more on this. The issue is that since a biopsy (needle or core, which just means a bigger needle) isn't a good option, the only other option left is a lumpectomy. AND because I have a clotting disorder and am on blood thinners, he does NOT want to do surgery just to put my mind to ease.

So, the plan is to wait... he's thinking that if it is cancer, I'm being TOO proactive. HUH? Anyway - give it three more months to grow. If it grows dramatically in a month or two, then I'm supposed to come in. Otherwise, check it in three months, then it should be large enough to do a biopsy. If it still isn't big enough to do a biopsy we wait longer.

Now, it may never get much larger. If it's still painful - say in six months to a year - we may still do a lumpectomy because it's troublesome. If not, well, then I over-reacted.

But, given how much press coverage there is around early detection for breast cancer being the "key" to recovery - who knew that I would be too proactive and demanding followup. Interesting huh?

Saturday, June 23, 2007

Sitting around and doing nothing

My first weekend "off" with the whole weekend to myself. And I'm sitting around doing nothing instead of all the chores that are impossible to do with a little one around. Ah, well. At least I'm de-stressing.

BBQ Round up is this weekend - thought it was next weekend - it used to always be the last weekend in June (I thought). So I'm probably going to spend all day tomorrow driving out to it, picking up some awesome ribs - driving two hours out of my way to deliver some out to my step-father... and then another two hours back home... just so I can pay an arm and a leg for what are still awesome ribs. Absolutely awesome ribs!

Tuesday morning I'm scheduled to see someone at the Breast Cancer center here in town. Don't know if they'll do any follow up, but it's worth trying. My gut tells me something is wrong - what... I don't know, but something is wrong. I just hope it isn't this. But, it's worth it for my sanity sake to make sure... so that's what I'm asking for. What I don't get is that if they found "differences" in my tests, all of which they aren't sure what exactly is going on... what I don't know is why they don't want to even try to do a needle or small cell biopsy. Hopefully, I'll have good news on Tuesday.

Wednesday, June 20, 2007

What to do when you have nothing to do

"A" has too much time on his hands.

He and his friends have come up with a new "sport".

Squirrel fishing.

Required - fishing pole (with no hook) and plain salted in the shell peanuts.

The picnic bench at the park is your boat - and cast off and see what happens next. I would love to get a bit of it on camera. I guess depending on where he goes there's quite a few nibbles and some pretty interesting gymnastics.

Wednesday, June 13, 2007

I can't let an "almost" green card do better than me... now can I?

You Are a Smart American

You know a lot about US history, and you're opinions are probably well informed.
Congratulations on bucking stereotypes. Now go show some foreigners how smart Americans can be.

Giving up on Rochester guy

I haven't heard from him since the night we talked and he asked me if I would panic if he moved down here to live with me. So - it's silence again. I figure if the statement "I don't know you well enough to even consider it. And, we're never going to know each other well enough if we never see each other or talk." Which he agreed with and then still went silent. Well, enough of trying long-distance relationships. They really don't work for me.

Follow up care

I spent the weekend thinking about my situation. Trying to figure out if I really do have cause for needing follow up care or if I'm over-reacting.

I do feel that because there has been a "change" and it's a pretty drastic change from six months ago... I want to have follow up, especially since a biopsy is such an insignificant amount of an issue, simplest case it's just an over-large needle and a band aide, if they decide a needle biopsy is too unlikely to catch something - the worst case it's like two or three stitches and I can still get by with a band aide.

So, I called my doctor and asked for a referral to the specialty clinic which they agreed to do. Then I called the specialty clinic myself and set up the appointment for an afternoon next week. No big deal.

But, then I got the weirdest call the following evening. I think that my doctor must have only glanced at the radiologist report (even though I had asked a ton of questions) on Friday. And when I asked for the referral, she must have taken a closer look... because last night the nurse called ... only I was pretty fried from work and didn't quite understand what she was talking about.

Apparently, my doctor believes that she would feel better if I was immediately referred to a cancer center for further testing. Now the breast care center I was trying to go to has mammo's, biopsies, ultrasounds, MRI's and an additional new technology that is being proved to be very effective at diagnosing breast cancer when all else fails (only found in 10 locations world-wide). Which is pretty much why I wanted to go there.

What I didn't ask or think about until later is if this means I'm no longer going to go there... nor what kind of follow up I'm being scheduled for, or anything. I've got no clue what they are planning. They were supposed to call me today - but didn't. So I assume that means I'll hear from them tomorrow. Which will give me a chance to ask a bunch of questions. It would be nice to follow up closer to home and not drive up to Minneapolis.

Anyway - still in a holding pattern.

To be honest, I don't really think I have breast cancer. And most every doc has said that it's unlikely I have it... and the odds that it's normal is like 95%. But I guess that after everything I've been through and with the 1 in a million odds that it took for me to have two clotting disorders, to clot without having surgery or an injury, to have clots in my lungs but not my legs, and to survive... well suddenly 5% chance that it's cancer seems high enough to do the tests to just make sure... I prefer a <1% that it's cancer at this point.

Friday, June 08, 2007

Test results, with more questions unanswered than answered

OK - so the first thing they say is that I have two benign cysts under my arm.

First question, I thought those were swollen lymph nodes? "Ummm... nope it says here that they are cysts."

Are they located near the lymph nodes? "Ummm... no. Wait, maybe. Wait... let me see... yes, they are in your underarm right where your lymph nodes are.

Could they be enlarged lymph nodes? "Yes, they could be, but the radiologist seemed to think they were cysts and he should know."

Do you have still pictures of them? "Yes"

Do they look like they might be lymph nodes? "Yes, actually they do."

So are you sure they are benign cysts. "of course"

OK - lets say they are cysts. How often do cysts that are diagnosed as benign turn out to be cancerous? "About 10 % of the time"

How can you tell that these aren't in that 10% range? "Well, we would have to do a biopsy"

Can I have a biopsy? "What would be the point? These are benign."

OK - so, I didn't have these until a month ago, at which point they weren't there or if they were, I couldn't feel them. And now they are large enough that I can feel them even when I'm just putting on deodorant and they hurt all day long. How big are they now? "I don't know, it's not written in the report."

How fast do they have to grow over a short period of time before someone wonders if there's something else going on? "I don't know"

OK - what is the treatment plan? "There isn't one. They're fine, they are benign cysts"

So, obviously I gave up that tactic... next questions.

Ok, so those are benign cysts - what about the mass? "What mass?"

The mass that was found six months ago that we were supposed to be looking for to see if it grew? "Oh, let me see... it says here that there is a fibrous mass. Oh, wait, that must mean you have a fibroid tumor."

Wait, I have lots of fibroid tumors in that breast, are we sure we're looking at the mass that was identified last time as NOT being a fibroid tumor? "No, I don't know"

Well, if Mayo didn't think it was a fibroid tumor, are you sure that's what it is? "Well, no"

Well, was it any larger than it was last time (which I know it must be because I can feel a lump there that wasn't there before)? "I don't know"

Well did they give any measurements or give you any scan of it so you could do a comparison to last time? "Hmmm.... let me look, no, I see it on your old tests, but it doesn't look like the radiologist did as thorough a mammogram this time... so he didn't take any stills of it this time to compare."

So, did he even do a comparison between the mass before and that same location in my breast this time? "No, it doesn't look like it."

Wasn't that the point of having the repeat mammogram? "Well.... yes... but then, honestly if he didn't see it this time, it probably isn't large enough to cause any issues."

How often does breast cancer get missed because it's too small to be seen in some of the scans. "Oh, that's common, probably at least 30% get missed the first few times that the patient is screened."

OK - so what are the odds that I might fall into that 30%? "Oh, no, you shouldn't worry - you just have two benign cysts and fibroid tumors. You're fine."

Are you telling me that I cannot possibly have breast cancer? "No. I'm saying that you probably don't"

Could this all be related to breast cancer? "Oh, I doubt it."

Any tests we could run to make sure? "A biopsy would tell us if it's cancer"

So, can you schedule me for a biopsy? "why would you want one?"

Well, if it isn't cancer is the pain and lumps from the cysts and fibroid tumor? "Oh, well the cysts should be painless, although it is common for fibroid tumors to hurt around your cycle"

OK - so both of them hurt all month long... why? "I don't know, but if you'd like, I can refer you so you can have a second opinion.

YES, PLEASE...! "OK, they'll give you a call sometime in the next two weeks."

OMG... are you kidding me? I don't understand how anyone can expect me to be "fine" and "not worry" after I've been given so many different diagnosis, and no one can answer any of my questions other than to say "you're probably fine, but we're not going to bother to prove it."

I don't know how to believe any of them any more. Not one of them will say "it can't be cancer"... they can say "it's probably not cancer" and "you should be fine"... but if pressed to the wall, they all back track. I just don't get it. Does everyone else hear things like this and just go "oh, ok, whatever you say!"?? I've lost too many family members to cancer. Two of did seek medical advice and got put off and ignored - until things were too far gone to do anything. And in fact, a co-worker just died from breast cancer which was missed in her first mammogram, but found in the second one - she only had six months after her second mammogram and the mastectomy and chemotherapy weren't enough to keep it from becoming terminal. I just can't seem to get the thought out of my mind that I would be insane to drop this until I know for sure. But, then, I've had doctor after doctor tell me "Don't worry about it" ... grrrr... I don't understand this well enough to agree with them I guess. And I don't know if I should. But I hate the fact that there are tests out there that would answer my questions and procedures to remove cysts that might eliminate my pain - it's almost as if they think I'm not worthy of treatment....

Wednesday, June 06, 2007

Update on "A"

He's back to dating the 15 yr old girl. This time with the support from her parents. I honestly think that they think he's an "ok" guy... and that "forbidding" the relationship didn't work, so they might as well go along with it and hope it fizzles out.

I met them both, but probably didn't make a very good impression - I was mid-visit from my sister and totally stressed out, needed to help "A" get things out of the garage, take him shopping, and hope to get home before midnight... wasn't very "friendly".

Anyway, the father gave "A" his job back at Country Kitchen, and helped him find an apartment. The apartment is only three blocks for his house, which freaks me out a little bit, but I guess, at least this way he can drop by pretty easily and unannounced and make sure his daughter isn't there.

So, "A" now has his own apartment, and two jobs. The first job - at the Raceway which only opened last fall is still figuring out how to run things apparently. As they don't write up work schedules. "A" has to rely on someone to call him to tell him each day if he's going to work that day. I told him that he should suggest a written work schedule that's made out a week or two in advance and they'd probably appreciate his thoughtfulness... but what happened instead is that they just told him. If it isn't Sunday or Monday (the days they are closed) and you aren't working at Country Kitchen, just come in and work. I think that's pretty cool... He should get a lot of hours this way.

He says he's turning over a new leaf. I'm not holding my breath... but am still trying to stand by him. He still has things to move from the garage, so we'll probably have to set up time on Sunday to finish the moving.

Feel good moment of the month

Went out to lunch today with my former manager. Was a nice break.

She stated "Your replacement is starting next week. She's got big shoes to feel, and I really don't think she has enough experience. You were even more irreplaceable than I thought."

More questions - from Phil

1. Were you named after anyone? a small copper-collored mexican chihuha
2. When was the last time you cried? about a week ago
3. Do you like your handwriting? not at all
4. What is your favorite lunch meat? Roast Beef
5. Do you have kids? 2 boys
6. If you were another person would you be friends with you? yes
7. Do you use sarcasm a lot? Yes
8. Do you still have your tonsils? No - lost them when I was 11
9. Would you bungee jump? Not on your life
10. What is your favorite cereal? Honey Bunches of Ohs
11. Do you untie your shoes when you take them off? No
12. Do you think you are strong? yes
13. What is your favorite ice cream? Pfish Pfood
14. What is the first thing you notice about people? face - eyes, expression
15. Red or Pink? Definitely Red
16. What is the least thing you like about yourself? my stomach
17. What do you miss most? my mom
18. Do you want everyone to send this back? sure, but only Phil is reading this lol!
19. What color pants and shoes are you wearing? Baggy faded blue shorts, barefoot
20. What was the last thing you ate? brownie
21. What are you listening to right now? "a" is watching Star Wars II
22. If you were a crayon what color would be? Purple
23. Favorite smells? Cucumber Melon
24. Who was the last person you talked to on the phone? SWAT Team at work
25. Do you like the person who sent you this? Absolutely
26. Favorite sports to watch? on tv? Football; in person? Baseball
27. Hair color? dull blond
28. Eye color? Blue
29. Do you wear contacts? Yes, but not lately - have been having trouble with burning sensation in my eyes daily - easier to not wear the contacts right now
30. Favorite food? Mexican, Chinese, Thai
31. Scary movies/happy endings? Happy endings - although I am just now starting to watch some movies that I never watched when they came out
32. Last movie you watched? well, Star Wars right now - before this Shrek, again! but, that I watched that wasn't "a's" pick? Hannibal Lector
33. Summer or winter? Summer
36. Most likely to respond? No one
37. Least likely to respond ? everyone else
35. Favorite dessert? Cheesecake Factory Dulche Deleche
38. What book are you reading? started The Davinche Code - but only got to the second chapter, and I keep forgetting to take it with me when I have appts (about the only time I get to read)
39. What is on your mouse pad? don't have one
40. What did you watch on TV last? The Closer - love that show
41. Favorite sounds? childrens laughter
42. Rolling Stones or Beatles? Stones all the way
43. What is the farthest you have been from home? Paris
44. Do you have a special talent? does tying a knot in a cherry stem with your tongue still count?
45. Whose answers are you looking forward to getting back? ??
46. What surprised you most about the person that sent this to you? she would wish for a Star Trek transporter to be reality
47. Do you like animals? yes
48. If you have one wish what would it be? To continue the Star Trek theme - how about the thing where they generate whatever you want from energy particles? Usually used for food & drink - but they make things like violins, whatever you need.
49. Where were you born? Monticello, IA
50. Favorite job? As much as I complain? My current one still. I work for an awesome company and my manager is doing a great job of supporting me and understanding that I'm supporting so many other workers.

test results, or lack thereof

I was supposed to get the results of the follow up mammogram (and follow up ultrasound) yesterday. As of this evening, my doctor's office still doesn't have them.

I did get my blood test results from last week. I'm still vitamin D deficient and still too high of cholesterol (although it's pretty low). So, I've been prescribed vitamin D megadoses to take once a week, zocor for the cholesterol and told to spend some time out in the sun.

But, I'm on antibiotic which says to avoid extra exposure to the sun, so I assume that means I should wait until I'm done with the series to get more sun. Pain is still pretty bad in the left breast - per the doc, the antibiotic should have reduced the pain a few days ago... I'm still going to finish the series of antibiotics just in case. We'll see. I just wish I had the mammo results and someone who will explain them well to me.