Saturday, January 31, 2009

The lump is invasive ductal cancer, the most common kind of breast cancer. The sentinal lymph node - the first one connected to the lump - was also cancerous, so he went forward with an axillary lymph node dissection. He made an incision over two inches long in my armpit, removes the wad of fat that is in the hollow of the pit which contains many of the lymph nodes. Lymph nodes are glands, small and embedded in that fat. Usually there are 10-15 nodes in it. The pathologist will find as many as he can in that tissue and test them. He also will do a thorough examination of the entire lump to assess the details of the cancer, and test for the clean margins. The surgeon attempted to take the lump out with a margin of healthy tissue surrounding it - if it tests as having clean margins, he's gotten out all the cancer. It's not uncommon to need to go in and re-excise where the lump was to get the clean margins. So he may have to do that. The good news is he won't have to back for the lymph nodes, those are gone and don't grow back.

I'm not going to lie, it hurts. There's a tube coming out of a hole in my pit, it's a drain that drains fluid buildup. I empty it regularly and measure the out put. When the output get's low enough I can have the thing removed - that will be a very good thing. The lumpectomy incision is 2 1/2 inches or so long and it's sore as well. I'm taking pain pills & using bags of frozen peas for ice packs. So two long cuts with stitches, and a hole with a drain in it.

I am very grateful it's my left side, as I am very right handed. Right now my left arm is pretty worthless. My wonderful hubby is waiting on me hand and foot, which I have a hard time with but I'm learning to just surrender to. It is what it is!

I am very thankful that my mother and father in-law were there yesterday waiting with him, it was a big relief for me to know they were there.

My brother and sister in-law came to the clinic, then returned to the house with us last night. I am so grateful for that. What a relief to be with them again. When my brother left last night he said "just let me know if you need anything - blood, kidney or whatever". He and I have always said to each other "you can have anything I have two of or anything I can live without". I am grateful for them.

My doctor..............not digging him much at all. First lesson I learned is - don't be the last surgery of the day. Stephen said the surgery took 3 hours I think? Before I was completely coherant, the surgeon was long gone. I was left with a nurse who was a complete idiot - that was a touch scary. Husband was going to record the doctor when he came out after surgery to explain what he had done, what he'd found. Before my surgery we told him we were going to do that. I reminded the doctor I was very Type A, I wanted details. He marched out, just said the basic's, too quick for it to be recorded. Then he left the building. Nurses didn't know squat. Stephen said he thought they'd removed 2 or 3 lymph nodes. Nurse said she thought my chart said 1 or 2 lymph nodes. I knew the sentinal node was positive for cancer, so I was freaked out that he might not have followed thru with the total axillary node disection, because I knew that HAD to be done, so was I going to have to go thru the pain of another axillary surgery in the near future?? I finally talked to the doctor about 9:30pm last night, he confirmed he had done what I knew had to be done, he removed the "level 1 and 2 lymph nodes". Full dissection. It sucks that no one could tell me that, because last night the arm pit surgical site and the drain were VERY painful, I went 3 hours not knowing what had been done. I was thinking - if it hurts this bad and he only took out a couple of nodes, what the hell is it going to be like when he does the whole thing?? Sucky situation, made my husband feel bad which pisses me off even more!

I'm in the market for an oncologist now. Dr. Surgeon said there are 4 at Baylor that do breast oncology and "they are all very good". I'm thinking it's 2nd opinion time. The treatment is going to go on for quite some time - I need to make sure I'm getting the best care of course, but I also need to be happy and comfortable with my docs - so far not so good. So my future will prolly look like this:

By Tuesday afternoon next week we should have full pathology. How many lymph nodes are involved? Did we get clean margins? And there are a lot of typing they do now, regarding hormones, size, etc. By then I'll have the "numbers" on it, Like stage whatever.

I would assume there's going to be some body scan's to look for spreading.

If my margins were'nt clean, there'll be a re-excision to get them. These days, in most circumstances, they get the exact same survival and reoccurance rates with a lumpectomy and treatment, or mastectomy and treatment. Some women automatically want the mastectomy - they just want the breast tissue to be all gone. I've already told my doctor that if my chances are exactly the same, I'll stick with the lumpectomy. If for some reason it's determined that my chances would increase with mastectomy - I'll have it.

Chemo - here's where I need the oncologist. They are very precise these days in making a chemo cocktail, customizing it for your tumor type. My neighbor said she avoided the worst of the chemo drugs because of some typing of her tumor. It's meant she has had no nausea, she get's tired and she's lost her hair - but none of the violent nausea we all think of when we hear chemo. They decide what recipe and how many rounds of it. My neighbor is having 4, she goes and sits for a day while she gets it, no spending the night. I think there's 3 or 4 weeks between her treatments.

Radiation - you usually end treatment with radiation. It's painless, it's administered quickly. There are a couple of ways to do it - anywhere from a couple of weeks, to 5 days a week for 6 weeks. The area may look a bit sunburned during the treatment, over the course of the treatment you may get fatigued - but that's it. No nausea or tremendous pain from radiation.

After all the treatment, they run a few tests on you, put you on a preventative medication of some type like Tamoxifen - usually for 5 years - then that's that. Bottom line is, they usually cure it these days. One in 7 women will get breast cancer in thier lifetimes- which is astounding! GET THOSE MAMMOGRAMS LADIES! Immediatly! If you have a mammo and they say there's a spot they want to "watch over time" make sure that time is 3 or 6 months - not a full year.

SEND ME YOUR RECOMMENDATIONS for breast docs - surgeon & oncologist. After I have all my pathology next week, I'm going to make the rounds and find a good fit for myself. My neighbor is very happy with her team - at UT Southwestern - so I'll be headed to meet them, I'm sure.

And feel free to email me anytime, about anything. No question is off limits, you won't "bother me". I want to give info out freely, so that anyone that cares about me worries the least amount possible. I'm a fighter, you all know that - I have no intention of letting this take me down.

Friday, January 30, 2009

My horoscope for today: (I'm not making this up!)

You're lucky and loved, it doesn't get an awful lot better than that. Make sure to let your friends know how much you care. They bring you up when you're down.

I'm not a fanciful person, not a believer in the mystical or astrological for that matter, but how appropriate is that? I'm making sure that everyone that has sent me their well-wishes, been so kind and caring this last month knows that it means more to me than I can ever say. You all certainly have brought me up when I've been down!

I feel good today, my boy went off to school in a good mood and feeling fine despite is stuffy head.

My anesthesiologist called me last night and said he won't have to fully intubate me because I'm not "heavy" - which is good for two reasons. One, it's nice to be told you aren't heavy, and two - it'll be much better for my neck, and my throat won't hurt so much afterwards. And he told me that I can drink clear liquids until 4 hours prior, including coffee! Yipee! When I told my husband I can drink clear liquids until 10:30am he said "clear, like Vodka?"

Thursday, January 29, 2009

Tomorrow's the big day. I can't eat or drink 8 hours prior, so plan on getting up and having coffee at 5:30am - be done by 6:30 to start fasting. I find myself frantically trying to get things done, like I'm going on a month long trip or something. Busy, busy, busy. I've laid in a month of pet supplies, I've bought some more comfortable sports bra's that don't have to go on over my head, and loungy clothes that also don't have to go over my head. Got the boy scheduled to go home and stay with a friend, dog walker coming to take care of the pup - I guess we're good to go.

I've had wonderful talks with friends, emails and voicemails - it's nice to be loved and cared for. I've had inspiring talks with a friend of my son's mom - and she's my neighbor - that found a lump last November, hers turned out to be what mine will most likely be if it's cancer. She's had her lumpectomy, she's two treatments into her four of chemo, and she's doing just wonderful. She's an inspiration! She will follow up with radiation for 6 weeks following the chemo, then put on a "preventative" drug ( a pill) and then that should be that for her. I cannot thank her enough for her kindness, her words of encouragment. She's bringing us dinner for tomorrow night. And she had chemo last week! She's my hero today.

A friend of mine has had a "concerning" mammogram, they called her mere hours after she got my email about my ordeal last week. She went in for a followup mammo/sono this week - and she has to have a biopsy next week. I need to come out tomorrow B9 for her, I know that would make her feel better. I'm thinking of you sweetie!

The boy is going to the Jr. Symphony Ball this weekend, it's western themed. We bought him the whole western outfit last week and it's so cute I can hardly stand it. We'll get pictures Saturday that I can scan. I'll email pics of my cowboy next week for any who are interested. I'm excited, it's been a long time since I've been able to put him in costume! Teenagers are so uncooperative. He's survived a bout of the flu this week, he had fever Sunday - Tuesday - just to up the stress level around here.

I'll be back over the weekend to post the 411 on the lump, if we have our answers. But at least I know for sure - it'll be gone tomorrow, and we'll know by early next week exactly what it is.

THANK YOU AGAIN to everyone that has encouraged me these last few weeks. It means the world!

Thursday, January 22, 2009

OK - posting comments seems to be almost impossible. I was going to say it IS impossible, but a fabulous New York Cabbie was able to do it, so he's broken the impossiblity barrier. I know a bunch of you guys have emailed me wanting to comment, I'll try and figure it out and post it here.

I didn't post today here, because I'm feelin' looooow. Just cuz, no one thing. Mr. K & I had a homework meltdown, but that was just the cherry on my crap sundae of a day. I wanted to write about the army of supportive women I know, from personal to family, neighbors and the venerable PC mom corp and my co-workers, they are just about the best, most compassionate people in this city. I knew that, I found that out when my my mom was sick for six short/long weeks last Xmas and died. It takes a generous spirit, a compassionate heart to do what these folks do all day & night, 365 days a year - and not just to the furry creatures they nurture each day, it's just who they are. LOVE YOU GUYS! Even when I'm foisting work on you that you don't need/want I love ya!

It's sunk in that i'm going to have been waiting 37-40 days by the time I learn the contents of the LUMP. That's a lot of uncertainty and waiting. So I'm going to try to cut myself half a freaking break tomorrow.

GOOD NEWS! Da boss delievered a "perfect" baby boy last night, 1/21/09 - Happy birthday Judah!

Monday, January 19, 2009

First Post

I'm a rambler, especially when I write emails I totally ramble. To spare all the folks that care about me long, rambling, emails with more detail than most would ever want to know, I'm creating this blog to put my long rambling updates regarding my recently discovered breast lump. The lump that is defying our efforts so far to learn of his makeup. If you want to know where my lump and I stand - check here. If you want the briefest possible explanation of how it's going - call my husband. When it comes to communication, he and I are polar opposites. What do they say, that women speak on average 20,000 words per day and men 7,000? I'd venture to say we're both better than average - I speak more, he speaks less. We balance out that way, I think. I have no idea if he thinks that, but I'll just continue thinking that because it makes me happy.

My breast lump history so far:

12/24/08 - First thing in the morning I feel a lump in my left breast, right around 2 o'clock (if my breast told time). It feels huge, gigantic to me. Merry Xmas Eve! Doctors office closed until Friday.

12/26/08 - See my fabulous doctor, she confirms that I do indeed have a lump. She says not to worry, it's probably nothing - most lumps that appear like this are nothing, cysts. She writes a prescription for a mammogram. My first - I suck, no doubt about it. 45 and getting first mammogram = very bad. Start at 35 ladies!

12/31/08 - Mammogram time. Even with my tender lump it is totally painless, amazingly NBD. I'm then moved to another room where a very nice technician sonograms both of the girls, so far the right one is completely clear - but she not only finds my lump, she sees two "concerning" area's near it. She goes to get the doctor, and I start to feel very, very anxious. Dr. Radiologist appears, sonograms the left (lumpy) breast for quite some time, then announces that the little spot we see nearest the lump is a lymph node, and the second one she sees is - nothing, just a shadow. Lymph node INSIDE my breast - how did that get there??? I find this news alarming, but he assures me it's totally normal, some women just have some in there. And this one is only of interest because it's living next to the lump. May be an issue, may be nothing. He tells me that my lump is "very concerning", it is not a cyst - it's a solid mass of some sort, and cysts aren't solid. He says I need a biopsy done STAT, he suggests a core biopsy, done with an oversized hollow needle, no big deal, he does them right here in this very facility. And he says it's not huge, it's "average" - about 2.5 centimenters long. It's now noon on New Years Eve, so scheduling for this is closed. Merry New Years!

1/5/09 - I get a full physical from my fabulous, bestus doctor in the world. Being the compassionate healer that she is, she rushes my results, the next morning I have emails. All blood, urine and pap tests are "perfect". Finally - a lil good news.

1/7/09 - Biopsy day! Loyal husband by my side, we discover he cannot accompany me during the procedure. They don't let men behind the door from the waiting room - ever! This is a women's facility, no men! Except my radiologist, right? He's a man. First thing I do when he enters is to express my displeasure at not having my husband with me. He smiles condescendingly - shoulda been my first clue. I ask him what the odds are that he'll miss - that he won't get a piece of the lump? Second condescending smile - he basically says I do not miss, ever! He get's on with it, and it's unpleasant - not horrible, but very unpleasant. He's grunting and pushing.....a giant needle into my breast. I start my usual nervous babbling, I ask "now if this test comes back as less than something good, what....." He cuts me off with "Oh I fully expect this to come back CANCER, I'm quite sure that it is CANCER. We just need the pathology report to confirm it....." No idea what he said after that, my vision starting getting dark and narrowing down to a tunnel, my ears are buzzing, I truly thought I was going to pass out. This thoughtless man just told me I had cancer, with me lying flat on my back, topless, while he's in the middle of grinding a giant needle in my breast - knowing I had a supportive husband right outside the door whom I wanted to be in there anyway. Awful, just the worst.
He says we'll have the results in 2 to 3 business days, Friday or Monday - "if you don't hear from me Monday, call me Tuesday morning to remind me" WTF?? I am positive he won't call first - no doubt in my mind.
Tuesday I'm calling, leaving messages. Finally in the late afternoon I pitch a fit, and I finall get a technician that says she can read my results to me,"Congratulations! It's negative, it's benign!" I inform her that the doctor had told me this was not possible, is she absolutely sure? I'm put on hold for 10 very long minutes. She comes back saying the doctor must to talk to me, he's going to call me right away. He does and says that he firmly believes that he obtained "insufficient tissue", that he did get a piece of the lump for sure, but he believes it's just the outside of it - not it's core, not anything that will show us what it actually is. He says it's because it was so hard and dense, he couldn't really penetrate it. I'm learning this now?? I'm good and truly pissed now, but to no end. He says I need it excised, the whole lump needs to come out or we won't know what it is. And he says he would be "shocked" if it's actually benign. I tell him I already have an appt with a breast surgeon the following Monday, and now he's shocked. "You already have a surgeon appointment?" Well you told me I had cancer a week ago you asshole, so yes, I got myself a breast surgeon. He then tells me he thinks the surgeon I chose is "one of the best, if not THE best around". Thankfully my bestus doctor ever had recommended him, not this guy. Oh! Lastly, he gives me his cell number - he knows I'm very upset with him, and so he wants me to call him with any questions I have. Anyone want a cell number for a rotten radiologist?

1/19/09 - We met the breast surgeon this morning. We've scheduled an excisional biopsy for Friday 1/30. Basically he's doing a lumpectomy - it's just not officially called that without a cancer diagnosis. I'll be prepped for a sentinal node biopsy as well. It's going to go down like this: at 12:00 noon I go to his office, he injects radioactive dye into my lump. At 2:30 at the surgery center across the street I have the surgery. I'm knocked out, thankfully, and he removes the lump, treating it as he would if he knew it was cancer, attempting to get "clean margins" all around it. The patholist is standing by and does a "frozen section" on the lump, basically flash freezing it and slicing a thin slice out of the middle. He examines this right then. If he can see cancer, and it's an invasive cancer (one that can spread) then the doc proceeds to remove the sentinal lymph nodes. With a geiger counter (I'm now radioactive, literally), and following the blue dye he locates the lymph nodes (in the arm pit) that are directly coming from the tumor, and removes them. If it's cancer, and if it has spread to lymph nodes, it always follows this path of closest one, then next one, etc. He'll also attempt to get that breast dwelling lymph node we saw on the sono - if it's nearby and he can snag it.
If the pathologist see's nothing but benign cells, or a non-invasive cancer, the doc sews me up and that's the end of this surgery - no node biopsy. We wait until the following Monday (Groundhog day, to continue the holiday theme of my lump journey) for the full pathology report. It could go several ways: completely and totally benign - not cancer, but something else (there's a couple things that could be, none lethal, B9 is good). A non-invasive cancer, or the more typical invasive Cancer. If the pathologist proclaimed it benign during surgery and then finds some invasive cancer with the more extensive testing, then I'm back to surgery for the sentinal lymph node removal after all. And if it's a cancer they also will test the margins around the lump, if they are not clean, if there's not healthy tissue surrounding the lump - he'll be going back in for further excision of the site - looking to get the clean margins. And it's day surgery, I'll be home Friday night. Recovery shouldn't be too bad, it'll be worse if he removes the nodes - then I'll have a drain in my pit for about a week which sounds unpleasant.

That's it for now, 11 days of waiting. My boss is scheduled to be induced on Wed., in two days. Hopefully she'll quickly and easily have a healthy baby boy, go home Thursday, then have a week to recoup before I'm out with my surgery. We are both, very, very stressed.

If anyone has suggestions, things pertaining to lumps I should read, doctor suggestions, etc. bring it on - I'd love to hear about it. I'm information girl - cannot get enough information.

I will post more about how I feel, what I've told my son, Mr. K, later. I figure this is where I'll put updates, post answers to questions that people are ask me - things like - like "didn't your mom die of cancer a year ago?" Yes, but it may have no bearing due to the circumstances, etc. I'll later post what is most likely to happen if it is indeed the big C, etc. And thank you for keeping this an adult site for now - no sharing with the under 21 set for now please.