Monday, August 30, 2010

I'm a Hoarder!!!

Oh Lord I've discovered the awful truth. I'm a hoarder. After staying with my parents, I've come to the realization that I have a lot....OK a ton of crap I don't need or even miss when away from it so, out it is going.

My goal is to go through something everyday and clean it out. It can be a drawer or a whole piece of furniture or a whole closet at most but it can not be a whole room because I've tried that before and it takes a whole day, I get frustrated at some point and say oh forget it so I don't do a good job and then I don't try to get rid of anything else again for long time.

I'm looking at this as my job. It's not something I can shluck off. Yesterday I cleaned out the piece of furniture by my front door that the crab is on. I don't know what you call the thing. I think you are suppose to put silverware in it. Anyway I had 6, I repeat 6 telephone books in there. Who uses telephone books? Gone. A bunch of hardware stuff. I don't even know what it was for and I started off saying to myself "oh you don't know what that is so you better keep it" then I realized that was crazy if I don't know what it is for how am I ever going to use it! Gone. One whole trash bag out to the trash can.

Today it was my dresser. Wow. Another whole bag of stuff and now I'm collecting stuff for a garage sale. Yep. I have never done a garage sale and I didn't think I ever would but I was having trouble getting rid of stuff out of my dresser because well, it good stuff I'm just not using it. So I'm starting a garage sale pile in my garage. We just had the neighborhood garage sale last weekend so it will be another 6 months before the next one. Plenty of time to be all prepared.

Those are my goals.

I've been watching way too much of Clean House!

And no, I'm not getting rid of any of my ukuleles! That's where I draw the line.

Sunday, August 29, 2010

Thursday, August 26, 2010

HER2

No news on the HER2 yet. Called on Monday to get an appointment with Dr. Barth for the 3rd week in Sept. That is when he wants to see me (about the middle of radiation). Called again and left another message today with his scheduler. Sometimes it does take her a couple of days as his schedule is crazy and I'm not top priority anymore. It's a good thing that I'm not top priority. I'm off to radiation and we are just waiting for a test result. I can't do anything about what the result of the test is and I don't have much of a choice once we do know what the result is so, I just figure I'll be told eventually. But, knowing right now wouldn't change anything. I'd be doing radiation no matter what and starting it first.

Needle biopsy Do I have cancer? Yes
MRI Is cancer in the lymph nodes? No
Ultra Sound Are we sure cancer is not in lymph nodes? Yes
Petscan Did the cancer spread? No
Oncotype Dx What is the chances of recurrence? High
MRI Did chemo get rid of tumor? Yes
Surgery/Pathology Did chemo really get rid of tumor? No

And now, am I really HER2 negative?

I'll know eventually and then I will share with you. Tomorrow is another day.

I knew the correct answer

Met my radiologist oncologist. I like him. He asked me how old my son was. I responded 16. He asked so he is in the 11 grade? I know the answer to that question, it's yes. But, when faced with a doctor I find I might has well have been injected with truth serum. So out comes oh I homeschool. Let's just say I shook the man's snow globe hard. He asked me more questions about homeschooling than I asked him about radiation!

I am scheduled for simulation on the 31st. That's is where they will put me in a simulated machine and take measurements. They will be radiating the entire breast 25 times and then the actual tumor site 8 times for a total of 33 rads. 33 drives to Hoag hospital. It could be farther and worse. The simulation will take about an hour and each visit about 15 minutes. I will see a nurse once a week and the radiologist oncologist once a week. Side effects are anything from light sunburn to tanning to blistering and peeling. The blistering and peeling they don't want happening so they gave me a list of creams and things to use. The side effects don't come on suddenly like with chemo it's a slow gradual thing and nothing will be noticeable the first two weeks. Or so they say. I think they name of the game is moisturize, moisturize. The other side effect is fatigue but, with those that have had chemo they don't notice it.

So simulation on the 31st and I'll start treatment either 2nd or 3rd.

Guess I'll start another count down.

Saturday, August 21, 2010

Hair

When Bequi buzzed my head I got one day to experience having a buzzed head before chemo started. Then I just became engrossed with the other end of my body. Then my hair fell out and then I got folliculitis. I had my hats and didn't give my hair a lot of thought. But, now. Now I have a nice covering of hair on my head. Thick enough that my scalp is not showing. And I have discovered a couple of things. I now know why so many men are walking around with their heads buzzed. Because its comfortable. It is so comfortable not having hair! Also there are two things women do with their hair. One, spend time making it look good or two not feeling too good when it doesn't.

I have no bad hair days and I spend absolutely no time trying to make it look good. I roll out of bed and it looks great! Now I'm not advocating for all women to go buzz their heads because I don't think everyone looks good with a buzzed head but, I have to say, I've been blessed. I have a nice shaped head and face to go with it. It works for me.

Not sure how long I'm keeping the look but, I sure am enjoying it!

Wednesday, August 18, 2010

Lighter moments of the last dr. appt.

So when I saw Dr. Barth on the 16th there were a couple of lighter moments believe it or not. One was he rubbed my head. Lightly and then grinned. I think he just couldn't help himself.

He also asked my how my range of motion was with my arm. I said oh its fine and then lifted my arm out and up to my head. His mouth fell open, OH MY GOD! I was not expecting that! You can do that two weeks after surgery? You are doing really well!

Its fun to surprise your doctor but, in a good way.

Monday, August 16, 2010

More understanding of HER2neu testing

Since I was told I was HER2 negative I haven't read that much about it but, now that it is possibly back on the table I've gone and read like crazy which means now I want to educated others!

So here is a better explanation. HER2 is a gene that is found in all breast cells in a pair. These genes put out receptors on the surface of the cell that take in information that tell it to do things like grow. In a breast cancer cell that is considered to be HER2 positive there a more than a pair of these genes and they put up a ton of receptors. On a normal breast cell there is about 20 thousand on a breast cancer cell that is HER2 positive there can be 2 million. So when these receptors pick up the signal (from our bodies somehow) to grow....well you get the picture the cancer goes crazy and makes for a very aggressive cancer (think rabbit ears vs HDTV). So here is a break down of the tests:

IHC-staining-these receptors pump out a certain protein so to test they stain the cancer for this protein and "look" and "score" what they see. If there is a normal amount of protein, negative, tons of protein positive but if you fall in the middle like I did, well they are not sure.

FISH-this test looks internally at the cell and counts how many HER2 gene pairs there are. Too many and it's positive, not too many and it's negative and that is what I've been told. Twice that it is negative. Oh wait make that three times now.

HERmark-the test Dr. Barth is running (at least I'm pretty sure he didn't say the name but, he explained it and I'm 99% sure this is it) this test actually counts the number of the receptors on the cell surface and determines if Herceptin (correct spelling this time) is going to help or not. How? herceptin works by binding to these receptors and telling antibodies in your body to come and kill kill kill. But if there is not a lot of receptors on the cell surface then the herceptin would not do any good. So this test not only tells if you are positive or not but if you are going to benefit from taking herceptin. AND of course there are side effects from herceptin including an increase chance of heart problems so do not take unless you really need to.

OK at least I feel that I have a better understanding of what is going on.

No More Chemo but new bullet to dodge

I'm done with chemo. Chemo kills fast growing cells and since my cancer wasn't growing anymore the chemo did all it could do which was a lot. We did get a good response from the chemo.

Now the new bullet. Seems never ending really but here it is and I'll do my best to explain this. We are back to the HER2neu. For review that is a type of breast cancer. For explanation think of cancer as an mm candy think of HER2neu as a peanut mm candy. Chemo kills the chocolate but leaves behind the peanut which can grow into cancer again. Not but a few years ago there was no way to treat HER2neu but now they have a drug. Its a protein so we are not talking about chemo. It coats the peanut and it dies because it can't get anything it needs to survive. I know I have been told I'm negative for HER2neu but its been a boarder line negative and here's why. When they test for HER2neu the first test they run is a stain test. Cheap and easy. Stain the tissue which turns the proteins a color and see what you get. What I got was that they couldn't tell for sure if it was negative but not enough to be certain it was positive. So the tissue goes off to have the FISH test. That tests stuff more internally in the cancer cells. That came back negative but the oncotype dx tested for HER2neu and it wasn't just negative or positive but they put a score on it. It came back negative but closer to the positive side. This has bothered me. Dr. Barth has sent it for a 3rd type of test that is conclusive. He will have the results back in about another week. The good the bad and the ugly....at least they can treat it with hercipin (good). But, it's administered every three weeks by IV (bad) and I'll have it for a year! (the ugly).

Crap.

Hoping to dodge this bullet.

In the meantime I will be starting radiation. It will be done at Hoag. Dr. Barth wants me to use one of two doctors and I'll be calling tomorrow to set up a consultation appointment.

Off to read more about radiation and hercipin.

Wednesday, August 11, 2010

Elephant in the room

OK I'm going to address the elephant in the room. What does it look like now after surgery? I know you just can't help but wonder and it seems like a trivial thing with such a serious disease but, here's what i got.

The right girl had the cancer and it has always been smaller than the left girl. My surgeon was concerned about this and said it would be even smaller but, I'm already use to it being smaller. So its smaller. If I look at myself straight on in the mirror its obvious that it is smaller but still shaped the same as it was before. My surgeon did some really magical things that I'm still trying to figure out how she did like the girls hang at the same level. Dang I don't think they were that level before surgery. How did she do that?

Also I have discovered something that I never realized before. I see myself naked the majority of the time by looking down. I'm in the shower and I look down, bath tub look down, etc. Its a different perspective than looking straight on and some how my surgeon made them look the same from that perspective. Its the craziest thing but when I look down, I can't tell anything was done. How did she do that?

Also she tucked the incision in on the side and a bit underneath the girl so I can't see it from looking straight on in the mirror and I can't see it when I look down I have to turn sideways and lift my arm and peek at it from an angle in order to see it. Its not easy for me to see.
How did she do that?

She really did take in my perspective on things when she did the surgery. She knew what view I was going to have and she made it a nice view.

The true test of a surgeon for me is how you heal. So far so good. But still healing so final verdict is still out.

Overall I feel very fortunate.

Tuesday, August 10, 2010

No stitches but.....

still itches. I have no stitches in my incisions. There are probably stitches internally but external its just a strip of crazy glue about an half an inch wide along the entire incision. I'm sure its not exactly crazy glue but, maybe it is. Feels the same. But, its itching! And sore but healing.

Just waiting to see my oncologist on Monday. Did call yesterday and he just got the pathology. Nurse said he hadn't had a chance to look at it yet. I told her I just wanted to make sure he had it and to let me know if I need to sign a release for him if he wants to do additional testing on the tissue they removed during surgery. She was very nice and said she would call me back if they needed that.

So just in a holding pattern for now but mentally gearing up for more chemo.

Saturday, August 7, 2010

Uneducated Guess

So when I said to my surgeon how can something 1.6cm go undetected on a scan she said well when something has changed this much it can hide. That really didn't compute or make any sense at all at the time but a light bulb came on. I'm guessing here and will confirm when I see my oncologist but I'm thinking if the cancer looks more like normal tissue than cancer then its going to be hard to see on a scan. And I think that's what happened here. The pathologist compared the tumor tissue after chemo to the tissue they had before chemo and one statement said it had markeable changes. The cancer cells were no longer dividing and the nuclei were small and uniform where before it was dividing and the cells weren't uniform.

Well that's my uneducated guess and I'll be getting it confirmed with my oncologist.

Friday, August 6, 2010

Perspective......

The following is brought to us by Jimmy H. who left this as a comment on my last entry but, I felt was important to make sure all read this. This explains the whole reason why your chances of recurrence is higher during the first five years and diminishes as the years go on. Thank you for the perspective!


I swear there is an 8% chance every day that I will have a cheese burger for lunch when I leave the house. For the rest of my life that is going to be huge amount of cheese burgers.

But your 8% is total for your life, which we will call PLE (which is what about 102 and surly (maybe its a fun surly)).

PLE (Pam's Life Expectancy) - PRA (Pam's Real Age) = PTTL (Pam's TTL) (Total Time to Live, a networking term, its funny!)

So the chance of a recurrence in any one years is:
PTTL = 8 years 1%
PTTL = 16 years .5%
PTTL = 24 years .33%
PTTL = 57 years 0.1403509%

I will eat about 29.2 Cheese Burgers this year. (This will cause me to run 93.44 miles to offset the calorie input of the burgers.)

The prognosis is pretty damn good!

Thursday, August 5, 2010

Prognosis

If you have read my blog in the early days you know how I feel about prognosis. Stats that are fairly meaningless but they are all we have. So here's the deal with chemo I have a 8% chance of recurrence which I prefer to look at as a 92% that it won't come back. That's pretty damned good. Don't know if you get those odds when we leave the house but out the front door we go.

That has not changed. I still have the same prognosis which is pretty damned good.

Just back to plan A

The plan when I finished round 4 of chemo was that I would have an MRI and if the tumor was still there it would be needle biopsied (again it would have been the 3rd time) and that would be tested to see if I would benefit from additional chemo. If nothing showed up on the MRI then I would go to surgery and if something showed up in the pathology (which it did) then it would be tested to see if I would benefit from more chemo. This is still the plan we just thought we caught a detour but we didn't.

What I'm disheartened about the most is that a 1.6cm tumor was undectable on a MRI and mammogram. I know I already stated this but, I had read and been told that anything larger than .5cm could be seen.

My advice is that if you feel something and you go for a mammogram and they tell you there's nothing there....pitch a fit. For, in the future, if I can feel something and no one can see it on a scan I'm doing what we did this time. I'm having it surgically removed.

Pleomorphic Nuclei

pleomorphic

Occurring in various distinct forms. In terms of cells, having variation in the size and shape of cells or their nuclei.

So now after chemo the cells looked more uniformed. Less variation amongst them. I know this is a good thing in the cancer world.

I just had to be right

I knew the fucker wasn't gone. It was hiding really well. I saw the MRI before and after. I saw the mammogram before and after. It was hiding I think behind the scar tissue and other crap. Here is proof, solid proof that while a mammogram is all we have, we don't have a good early detection system. The tumor had shrunk from 2.5cm to 1.6cm which means a cancer tumor of 1.6cm was able to be undetected on a MRI and mammogram. Fuck the imagery I knew I was still feeling something.

So what do we have? The chemo did a lot. It shrunk the tumor significantly so that my surgeon had an easier time. I got clean margins which means she got it all and I don't have to have a second surgery. I had a negative lymph node so the cancer didn't go into the lymph nodes. What else? The grade of cancer dropped from 3 to 2. Chemo killed the cancer enough to change how aggressive it is. The Ki-67 (how fast its growing) has gone from high proliferation 80% to low less than 5% (this is huge). Mitosis score dropped from a 3 (highest you can get) to 1 (lowest you can get). According to the pathology report the cancer cells look different than they originally did. They have smaller less pleomorphic nuclei. What does that mean? I don't know either, will be looking it up but its part of what down graded the cancer from a 3 to 2.

In the end, my oncologist is not going to be happy. I'm bracing myself for more chemo which I'm sure he is going to want to do. I have a high recurrence score.

Well, shit on a stick.

Monday, August 2, 2010

Life's detours

This whole ordeal with breast cancer was a gigantic detour in my life. And like all detours it was an inconvenient, out of my way, not where I wanted to go, why the hell is it taking me this way, what? we could have gone over there, why does this have to be happening now? pain in the ass (and other body parts).

Radiation is yet to come and I'm not done yet but, at the moment I have a pretty shitty attitude because I'm bored. Yes, I can honestly say that at this moment I'm bored with breast cancer. I don't want to read any else about it, I don't want to see a pink ribbon or anything else breast cancer related for that matter. No I don't want to walk in a for the cause walk. I just want my life back.

I think this is temporary and one of those "7 parts of going through a shitty part of your life" that you read about. You know, denial, acceptance, etc. I think this one is called pissed.

When anxiety diminishes....

So does the number of blog entries. Funny how that works.

Also had a nice melt down last night. Water works galore. Can't blubber when someone is sticking wires into your numbed up boob but, you sure can blubber about it after. My mom held me while I release. She said you don't have to be brave now let it out. Slept good so it was needed.

Update: called my surgeon about the attached gauze and she said that often it comes off while bathing and if not on Thursday she will remove it. More came off today.

I can see hair on my head. Yes its filling in. I am now able to rub my hand across it and get that ocean sound again just like when Bequi first buzzed it. It's not as thick as that yet so the sound isn't as loud but it's getting there.

Sunday, August 1, 2010

Reveal Day!

Off came the ace bandage from hell today. Oh my no wonder my back was killing me. I knew it was tight but that was crazy.

I have an incision along the side of my breast and a smaller one at the very bottom part of my arm pit where she removed the sentinel node. I have gauze stuck the incision on the breast and I'm leaving it alone. I'll call the doctor tomorrow to let her know.

Wearing a sports bra now that closes up the front and that seems to be giving me enough support.

So how does it look? Its a bit swollen but I can't really tell much difference from the way it looked before. Well aside from the fact that its battered and bruised, size and shape wise it looks like it did before but swollen, battered and bruised.

My mom helped with the whole process and she said I don't think she took much out. I have no idea how much she ended up having to take.

I feel emotionally good with it.