I have "petite" red blood cells!

There is something on me that's small!! I'm so excited.

I also have a ejection fraction of 66%. Now this may be surprising to some, but it turns out a normal EF is 45%, and so Dr. Pierce said I get an "A" for having such a good EF. This means my heart is doing well enough that I can take some pretty caustic stuff.

Next week, just about no matter what, we start war. The bad news is that I really do have this very weird HER2 response. In fact it's so weird, that I'm probably going to have a second biopsy next week, and some very accomplished chemotherapists are chatting back and forth about my particular case.

Dr. Pierce met with Jenny and I today and really talked out chemo strategy for my particular set of circumstances. I have an aggressive kind of cancer so we want to treat it aggressively. Dr. Pierce (onco) and Dr. Steinhaus (surgeon) are going to plot together and I'll be scheduled for the second biopsy and for the chemo next week. The infusion of chemo can take up to FOUR HOURS!!!! I had no idea! I thought it would be 30 minutes in and out like an oil change for the truck!

Something is going to happen. I still don't know exactly what, but I do have confidence in Dr. Pierce and his decision(s) about how to best treat the enemy in me.

Kick Butt Week

Between one thing and another this week, and the fact that I'm catching a cold, I came home totally wiped out tonight. I do mean TOTALLY wiped out. I came home, went straight to bed and slept for a couple hours, then woke up tired. I can't believe there's one more day in this week!

The nicest thing about today was that at the end of the day when I was fall-on-my-face tired, I got a lovely present from three colleagues who sensed the road was getting tough. Kindnesses like this are fuel for my soul right now. I couldn't get a really good picture of this bracelet no matter how I took it, so here's the best I could do. It's lovely, and I appreciate those who took the time to tell me they cared!

Tomorrow is the appointment with the oncologist. This is the point in the movie where the tense music is qued up and lights get dimmer to let you know that something monumental is happening. Well, it's monumental for me.

Many thanks to the kind angels that brightened my day today. Many.

The Blessing of Chocolate

Today I had my MUGA, the heart test. I'm only slightly radioactive and I don't know my ejection factor yet, but I will on Friday. The ejection factor tells the docs how healthy my heart is and how aggressively they can poison me. The test was no biggie.

I talked to Dr. Pierce (the oncologist) today and he all but personally guaranteed that the second pathology report would be ready on Friday as well. That will go a long way toward figuring out what kind and duration of chemo would be best.

I talked to Dr. Steinhaus' surgical coordinator (the surgeon) today and to help see if the cancer has moved into my lymph system we're going to try and get a sentinel node biopsy done in quick time. When you do the chemo first, you don't get to stage the cancer, but by finding out if it's out in the lymph system it will give us some ideas of how advanced it is. The more information I have the more I can make informed decisions.

Chocolate brownies and a bundle of love visited me tonight. I was really glad to see my brother and his family. Anyone with chocolate is welcome to stop by, I might add. Amazing fresh vegetables, aroma therapy goodies, and mostly just the healing grace of family and the love that travels with them.

Things are happening, and happening fast. I expect tomorrow and Friday to be important decision days in various ways.

Now it's time to close my eyes for a while.

Post-Script

Glad "Press 'n Seal" is a great idea to cover dressings so they don't get wet in the shower. Not effective, but it was a cool idea.

The Many Uses of Superglue

I got to see the incisions today. I'm very pleased with how tidy it's been put back together. I have a scar from a surgeon that must have apprenticed with Dr. Frankenstein, so now I'm always interested in having docs do a nice neat job. The incisions are closed with superglue and look very neat and tidy. I just have one question.

Why do they ask you what you're allergic to, if they are going to just do things the way the want anyway? I'm allergic to plastic tape, and was promised that they'd use something else on me. Yup, you got it, they used plastic tape, so I'm having a very nice allergic reaction.

Heart test is tomorrow. Let's hope I can pass! What is it?

MUGA Scan
What is a MUGA scan?A MUGA (MUltiple Gated Acquisition) scan is a test that evaluates the Left Ventricle Ejection Fraction (LVEF) which is the percent of blood being pumped from the left ventricle of the heart out to the body. The MUGA scan also shows the wall motion of the heart and the motion of the heart as it beats. The scan produces a moving image of a beating heart. A MUGA scan can be ordered either at rest, or with stress (exercise*). MUGA scans are typically ordered at rest.

My Son-in-Law Wants to Know if I'm USB-compatible

No, I'm not trying to be "snooty" or show you my nose hairs. This is two shots of me (taken by me) showing the dressing and then one with my shirt in it's normal position. You can't see the BIG spot where the port was inserted, just a little spot on my neck where the doc had to turn the catheter down toward my HEART!


Of course if I do it, it has to be done a particular way. I wore a shirt with an open neckline. I had my daughter trace the line of the shirt on my body, and then she traced the line where my bra is. We requested that if physiology made it possible, could the radiologist please place the port there so that it wouldn't be awfully visible once it had healed? He looked and said, "sure." He appears to be able to do surgery between the lines, quite literally. I have to leave the dressings on for a week, so It'll be a bit obvious that I had something, but after that, I think it'll stay nicely and discretely hidden behind the neckline of most of my dresses and shirts.

I'm very appreciative to the surgeon for being willing to take my preferences into account when placing the port.

I was supposed to go tomorrow for a visit with the oncologist to select treament, but there was some sort of mess-up at the lab, and so he thinks I'll be able to meet with him Friday to select treatment options. Jenny will come too to be able to help me wade through the medicalese.

Being the super chicken that I am, I'm surprised that things went as smoth as they did (They needed me awake to do the surgery!). I'm really feeling ok, but am not supposed to do anything strenuous for the next while. Thankfully I don't work in a warehouse on in construction!

One of the interesting details is that I can't get the dressing wet so they recommended I use "Saran Wrap Press & Seal" to cover the dressings for the next two weeks! I would have never thought that stuff would cling to skin, but evidentally it does. Learned a new thing today.

I now have my first piece of armor in my fight against the enemy within. Let's get this show on the road!

I ordered a nice little feminine-looking cap to wear when the hair starts to go. I'm going to get my hair cut short before it falls out, and when it's gone I can wear a tad of a covering but nothing that'll make me hot like a wig would. I was glad the cap came Saturday. When the hair goes, I'll have a tad of something to adorn my pate with. I also plan to getting some simply outrageous earings to offset the bald look too.

Now doc, let's attack this stuff! I won't ever be ready, but I am as ready as I'll ever be!

The novacaine has worn off and I don't much feel like taking a pain pill yet. Maybe later. It's a good thing it doesn't hurt much because the fools at Northside forgot to give me a script for anything really good.

Awwww, Isn't She Cute?

Couldn't stand it. Just got this and had to share. This is a picture of my grand-daughter in the making. Sometime around December we'll get to see her up close and personal. In the mean time, here's a preview courtesy of these new-fangled 3-D ultrasounds. I have to say, I watched them do this ultrasound and most of the time all I could see was the head, and once the vertebrae, and a foot and arm. She seems to like to have her arms and hands up close to her face. I'm betting on a thumb sucker. When they got to the shot for the sex, I looked while Jenn covered her eyes. I could never be an ultrasound technician because I'm not able to visualize what the heck I'm looking at about 80% of the time, and was definitely CLUELESS on the sex shot. You'd think it would be obvious, but nooooooo, it's not. In any case, I'm told it's a girl. I'm tickled that I get to be a grammy to a girl now. Wheeeeeee!!!!

Heh

Today I worked on teaching my grandson what he calls "the underwear song." I learned this in Girl Scouts so it can't be too risque. At two and a half he thought it was funny.

I Have Lost My Underwear
Sung to the Tune of Bye Bye Blackbird

I have lost my underwear
I don't care, I'll go bare,
Bye Bye Long johns.

They were very dear to me
Tickled me, hee hee hee!
Bye Bye Long johns.

If you see that little trap door behind me
You'll know where to find me!
I have lost my underwear
I don't care, I'll go bare
Long johns Bye Bye!


I'm sure my daughter and son-in-law appreciate the music lesson.

I will post next after the surgery tomorrow. Maybe by then I'll have a decent pathology report back too.

Research on Chemotherapy Treatments

Geeeeezzzz!!! Jenn and I researched chemotherapy drugs and alternatives and clinical trials and drug options today. It is a medical nightmare because there are generic names and brand names that mean the same kind of drug. Some drugs work on the cellular level during the time period when cells are reproducing. Some drugs work on the cellular level during the time period when cells are not reproducing. My favorite drug is made from fungi and is essentially an antibiotic against cancer. I don't know how people who are not science-oriented manage to wade through this information. It took a nurse, a medical dictionary, the web and a sometimes-science-teacher a looooooooooong time to figure out the very basics. But we feel good about having mapped out some basics, and found our way through some options. I have some clear ideas about what I will or will not be doing with regard to clinical trials. In conjunction with the oncologist, I'm likely to make decisions this week which will determine much of the attack process on the enemy within. I can't tell you how wonderful it feels to have sorted through this inscruitable mass of information and come to a place of understanding from which I feel like I can actually talk with the oncologist!!

Getting Real, Very Quickly

In the span of about an hour this morning arrangements were made for the heart test, the port to be put in and for me to have my second meeting with the oncologist.

Monday is when I have to be up at Northside to get my port put in. I'm pretty much a total CHICKEN, so I'm a little nervous about that.

Tuesday I see the oncologist and I suspect that will be when we decide what chemo cocktail will be the one for me, and that will give me info about length of treatment and form of treatment and drugs likely to be used.

Wednesday I go get the heart test to see how much they can beat up my body before my heart is likely to be overwhelmed.

The port makes it very, very real. This will be the first cut someone will make on me as a result of the cancer. I'm scared of hurting. I'm scared of these dang procedures they do under "sedation." I have such issues with sedation as an anesthesia. It's scary to me. Heck, I'm scared silly that they're going to put something into my AORTA!!!

August 2nd they say I have cancer and by August 27th I have my body prepared to get poisoned. Geezz, why can't the biopsy results from the second opinion come back??? I need to "psych" myself for whatever kind of treatment options they're going to do with me. I want them to KILL the cancer, just not me.

If you have a cancer story about your mother, friend, kid, former boss, dog or your hamster, please don't tell me about it. I have to find my own way through this story. It won't be the way your mother, friend, kid, former boss, dog or hampster did it. It will be my way. I may have to whine at times. I may have to be somewhat inconvenient at times. But I'll be doing it with the attitude that I'm a warrior woman seeking to kill the enemy within me. I know a warrior and he admitted to being scared. I think it's OK to be scared as long as I just keep putting one foot in front of the other and keep moving on the journey, no matter how confident, scary, or painful it becomes.

Want to know what a "port" is? Check out this site: http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/Implantableport

Today's Adventure

Well, the top may be in deep doo doo, but the bottom is in better shape. I do not have ovarian cancer. I do not have cancer in my uterus. I do not have cancer in my cervix. I do have a fibroid that I didn't know I had. I'm told not to worry about it, even though it's something that's growing inside me and the other thing growing inside me is really, really bad. Go figure. The lining of my uterus is a mere 0.35 mm. I'm told that's good. The testing today was GOOD because no one had to hurt me, cut me or put a needle in me to find all this out. Next test is Monday to see how hardy my heart is and if it can stand the chemo. No news yet from the surgeon about getting a port, and no news back yet from the 2nd pathology opinion.

Friends

I'm lucky. So far I don't hurt. I don't yet feel sick. I do feel overwhelmed with very, very technical information. I get to select what treatment I want, but it means sorting through incredible medical jargon, and very heavy pro 's and con's with implications I'm not sure I completely understand. I think I'm selecting the course of action that will give me the best chance for survival, but it's tough to be in charge of something that is so daunting in terminology, scientific variables, and a certain amount of emotionalism. Two friends called me for different, and yet the same reason last night. Each one was a balm for my battered soul. They were angels who held me up. I try not to look or sound scared, but I am. I try not to be pessimistic, but jeeezzzzz there has not been a lot of good news in this learning process. Everyone right now that has spent just a moment saying something uplifting or sending me an encouraging e-mail, or calling me is an angel sent by the grace of god right now. I know you'll be even more important later as the treatments make me genuinely feel bad, maybe even look bad, and probably isolate me. So, if you ever feel like you'd like to be a part of the angelic band, and have invisible wings for a little bit, know that it's really possible to be one on this earth, in the here-and-now.

Saw the Oncologist

OK, today I saw the oncologist. Because my HER2 receptors are ambiguous (Something he's never seen before!), he's going to jump on the pathologist to decide one way or the other. If I'm HER2 negative there are drugs he can give me, and if I'm HER2 positive there are other drugs he can give me. But to mix the right "cocktail" of chemo he needs to know for sure which genetic way my tumor tends toward, and he thinks it can't be ambiguous. They also participate in clinical trials at this location so some advanced drugs may also be available to me depending on the genetic profile.

In the mean time I have to arrange some testing to make sure my heart is strong enough for them to poison me, and not have death as a side-effect of the treatment. They drew bunches of blood for testing, and somewhere (I hope Northside Hospital.) I have to get a "port" put right straight into my aorta so that they can do blood draws and give treatment without having to search veinly for veins everytime. Since chemo can "burn" or scar veins, the port is the most convenient way to ensure there is easy access for treatment. I like easy. I also have to get a chest x-ray somewhere along the line. I have an appointment with the oncologist to go over results of various blood and other tests soon, and within the next couple weeks I'm scheduled to start chemo. AFTER the chemo, when the tumor is smaller, and it's more likely to be more tightly contained (not as spread out), then I'll do the surgical part of the treatment.

At some point in time, I know I will lose my hair. I'm happy to say I have enough hair to give my hair to "Locks of Love," so that a child with alopecia or taking chemo can have a wig. I challenge anyone with enough hair to also consider giving your hair to Locks of Love to do so. See their website at www.locksoflove.org to see if you meet their qualifications! Maybe we'll have a major haircutting party if enough people are interested! Anyone out there crochet? I'm going to be a baldy when the weather gets chilly! (Please hope it gets chilly soon! I'm about to roast!) I suspect it'll be sometime in October by the time I lose my hair, so no rush.

Prognosis

I've been asked what the prognosis is? The real answer is "I don't know." The good part of all of this is that I have the common cold of breast cancer so there is a lot of research on this particular kind. The reason they call people who have had cancer survivors, is that everything is given in statistics. Right now I'm hoping that my particular brand of tumor will be reactive to chemotherapy and that I'll fall into that nice group of folks who have a 10-year survivor rate. There are just so very many variables about "prognosis," that the only thing I feel I can do, is to aim every bit of my energy on selecting the best possible statistical chances and hope I'm not in the percentage that didn't make it to 10 years, or five years, or two years. That's how the stats are given. I'm going to select treatments that give me the best possible chances given my personal variables, but as Clemmons noted, "There are lies, damn lies and statistics." I now live in a world of statistical averages, and can only hope that my situation is in the "normal" part of the bell curve and not in the negative tail. (My statistical teacher would be so proud of me for being able to frame that last sentence!)

I have today. Today I am working at making it possible to have tomorrow. How many tomorrows I have are left up to forces much more mystical than my mortal brain can fathom. I'm hoping for more tomorrows, but enjoying life in the present a lot, just in case I don't fall into the "right" statistical group. All of us must die; some of us do it faster or slower than others. I don't know which category I will fall into ultimately, but I'm grateful for the 55 years I've had so far. Anything else will be a great grace, and I'm shooting for the 10 year stats.

The Beginning of a New Quest

On August 2nd, I got some news. The lump in my right breast was determined to be cancer. Testing was done on the biopsy tissue and more information was gathered. The one thing I've learned lately is that information has to be gathered, but it all comes back in drips. A piece of the puzzle here, another piece of the puzzle there, but always the puzzle remains. Just having a diagnosis doesn't mean you have a clear path to action.

Right now, this is what I know. I've met with two surgeons to see what approaches they suggested. I've selected a surgeon in north Atlanta to work with. A gracious soul privileged me with a view of her handiwork, and I know that I want her to be in charge of my surgical treatment.

My tissue samples have been sent off to another lab for a second opinion, but the first pass indicates an aggressive form of cancer that is estrogen and progesterone negative. That means there are two whole groups of chemotherapy drugs that can't be used effectively with my brand of cancer. My HER2 receptors are neither positive nor negative, and therefore until removal of the actual tumor and more studies, I'll be treated as if I am HER2 positive.

I've gotten an MRI of the girls but the results are not yet back. The purpose of the MRI is to determine if there are any further areas of concern (i.e., tumors) in other locations of the breast that can't be adequately imaged by the mammograms. If there are other areas of concern, that will certainly influence the urgency and extent of treatment. It's presumed at this time, that the tumor that has been biopsied is the only location.

I see an oncologist in Carrollton on Monday (August 20th) about chemotherapy options, and on Wednesday I have some further testing scheduled. I have a lot of very technical information to sort through and then decisions to make about what treatment options are my preference. I'm very encouraged by how open the doctors have been so far. They have been giving me the information and allowing me to decide what option I prefer. I appreciate that.

At this time, I know that I will get surgery, some form of chemotherpy and radiation therapy. I don't know what order that will be done, and I don't know how I'll feel. The surgery may be more or less extensive -- I don't know yet what is likely to be the best choice. The chemotherapy will have to be tailored to the tumor and what it most responds to. There are some drugs that will be excluded because of the ER and PR negative issues. I'm sure that there will be attempts with other drugs, and I don't know yet what they will be.

I'll try to update this blog so that you can find out the current status of my quest without me having to repeat myself over and over to my caring friends and colleagues. I appreciate your prayers and your kindness.