She's in Recovery...

Liz's surgeon just came out to tell us that her surgery is complete and everything went well. He said everything looked normal, which is great news. Plus, he even gave us a picture of her ovaries and uterus (maybe Liz will even let us scan it and post it on the blog later)! All of that is now on its way to Pathology to determine if the cancer spread there as well.

She should be heading to her room in a few hours. If she is awake enough later today, we will do another post.

Thanks for all the prayers and positive energy everyone keeps sending our way. We wouldn't have been able to get through this without all of you.

Slice Morning

I'm not very excited about this day. I wish I were off enjoying Spring Break on a warm beach. Operating Rooms, to my fuzzy memory, are not particularly warm, nor do they serve margaritas. They do have narcotics and bright lights, though, so I guess that's something.

I suppose that it's fair to say that I have been in a bit of denial about this surgery. I worked a full day yesterday and had my brother over for dinner. I haven't packed a single thing. I haven't even cried ... well, since they told me no kids. That day, I cried enough for the rest of the month.

The mastectomy/wire placement/lymph node bisection/reconstruction was so scary and so involved that I dreaded it, but I felt ready. Suck it, cancer. I wanted the cancer out of my body. I wanted to fight it. I wanted to be in control and I felt blessed to be the one chosen to lead the charge. (I know that sounds strange, but I really did feel kind of honored. Out of all of the people in my family who could have been afflicted with this battle, I'm glad it was me.) Plus, I knew that I was going to get a nice new figure out of the whole disaster.

Today is different. Today, hopefully, we aren't removing cancer. We're just throwing an earthquake into it's path. That's a bold step, I guess. But I can't help feeling that I have to go through another major surgery and all I get out of it this time is three scars, hot flashes, abdominal weight gain, and osteoporosis.

That's not nearly as exciting as a new rack.

Sigh.

The Next Round

The decision has been made. I will be going in on Tuesday morning for a full hysterectomy. Why the full thing? Well, my tumors have put me at an increased risk for ovarian cancer, and the estrogen that the ovaries produce is now dangerous to my body. Also, the medication that I will soon start will put me at an increased risk for getting endometrial and uterine cancers. Finally, because I have a history of abnormal paps, I am at ... you guessed it ... an increased risk of developing cervical cancer.

So, soon I will have no ovaries, no uterus and no cervix. I will have at least three new scars to add to my collection, which I never wanted to start in the first place. I'll also be in menopause. Watch out!

The laparoscopic surgery is scheduled for 10:30. Scott will post an update as soon as he is able. Please pray for a successful surgery, that they do not find any more cancer, and for me to have strength. I'm doing pretty well with all of the prayers that you have been offering, so far, but a few directed ones couldn't hurt.

On a lighter note, I feel that it is very important to go into procedures such as these with a good attitude and a cheerful, hopeful spirit. That's why I wore this shirt to my mastectomy.

"This Is My Cancer Fighting Shirt."

To psych myself up for another round of injections and sutures and swelling, I wore this shirt today.

It says: "Yes they are fake! My real ones tried to kill me!"

I hope it brings you as much joy as it does me.

Oh, also. Check this out. I can almost reach straight up, now.

Pretty awesome, huh?

So Happy

I just thought that I should tell you that I'm about to eat Punch pizza with a Blue Moon beer. Then, I'm going to have a peanut butter killer brownie. I'm going to do the all of this while watching Twilight Saga: New Moon.

Jealous?

Silver Lining - A Series on Cancer Optimism

Number One

I hope that this doesn't offend all of you soccer moms, but I would like to point out one good thing that will come from my inability to have more than two kids.

It is entirely possible that I will never have to drive a minivan!

News: Some Awesome and Some Mildly Sucktastic

I had my appointment with the oncologist, yesterday. As we hoped, all of the results are back. It is somewhat of a mixed bag. Here is a summary for those of you who know things about cancer.

• My oncotype DX recurrence score is 20.
• My 10 year distant recurrence rate is 13%.
• I am BRCA1 and BRCA2 negative.
• My chemotherapy benefit is calculated at 4%.
• My 27.29 score is 18.38.
• My Estrone is at 26 and my Estrodiol is at 48.

So, what does all of this mean? Well, I'll start at the beginning (and I'll rate the news in case you feel like making a chart of pie graph or something.) Here goes:

• The oncotype DX is the test that was done in California. It takes a very detailled look at my tumor samples to predict the benefit of chemotherapy and the likelihood that the cancer will recur within the next ten years. The score of 20 puts me into the intermediate risk category. (Moderately Sucktastic)
• My 10 year recurrence rate is 13%, which is higher than we had hoped. Using simple math (which I'm sure you are all capable of doing) I have a 87% chance of making it through the next 10 years without getting breast cancer, again. I am a little disappointed by this, because I had a double mastectomy. I would have thought that would play into this number, but it doesn't. As the oncologist told us, "surgery can never get out 100% of the tissue." So, we got the tumors, but there is still a tiny amount of breast tissue, like 3%. (Mildly Sucktastic)
• The two genetic tests that were done were BRCA1 sequencing and BRCA2 sequencing. They were both negative. This is great. It means that I am not at a 40% chance of getting ovarian cancer. It means that we do not know of a genetic reason (although there are other tests that can be done) to indicate that Laila, my mom and my sister are in danger. (Awesome)
• Using the information that we have from California, it is predicted that if I do chemotherapy, my chances for recurrence drop by 4%. Since this number is so low, and since chemo has so many side effects (including increased incidents of other cancers) it is decided that I will not have chemo. (Scary to not be as aggressive as possible, but Great)
• The 27.29 test is called the Tumor Marker. It isn't so much a definitive test as a baseline. We hope to see a number below 37, so my 18.38 is okay. We will be testing this each time I see the oncologist. If it spikes, that indicates that there is caner somewhere in my body. (I will give this a rating of Average on the suckometer.)
• Estrone and Estrodiol levels are within the normal ranges. However, since my tumors grow using estrogen, we hope for as low as possible. My oncologist said that levels are "not alarming, but I would like to see them be lower." So, ovaries out. Also, no egg freezing, which would increase the amount of estrogen too much. Also, it would be good to take out the uterus, as well, since the estrogen inhibiting medication causes an increased risk for endometrial cancer. (Vaguely Sucktastic, but not so bad.)

So, that's what we learned. Some decisions were made, yesterday, which I like. The next one to make is which doctor we use for the procedure. We have appointments this week to see a gynecological oncologist and one to see my regular gynecologist.

Stay tuned.

A Good Report with Hopes for More

On Friday, I had an appointment with the plastic surgeon. It went well. He said that my incisions are healing nicely and that the fluid in my back is being re-absorbed as well as can be expected. He claims that the weird and totally annoying numbness in in my back will likely subside, over time. I can start moving my arms when I walk, thus freeing me from the very odd gait of someone who moves her legs like a power walker, but keeps her arms straight at her side. I'm sure that my neighborhood has been enjoying laughing at me for that.

Also, he cleared me for driving and lifting Owen (yea) ... and vacuuming (boo). Among all of these other things, he said: "You're a joy to look at."

That sounds creepy, right? But I think he was trying to be nice ... or impressed with his own work ... perhaps both.

So, I have enjoyed a weekend of hugging my children and going out to meals for my birthday and viewing poisonous frogs at the zoo. I'm pretty tired now, and my muscles ache a little more than they did before, but I have been wearing real shirts (without front zippers) for two days now. Oooh, AND, I hardly get stuck in them at all! Hooray!

Tomorrow we see the oncologist. Hopefully all of the results from the genetic tests and the oncotyping will be back. (In case you aren't an expert with the cancer lingo, the oncotyping is the test for which my evil, cancerous cells flew to California) These reports will help us to determine whether we go with the medicinal route, the ovary removal route or the hysterectomy route, plus which doctor we trust to perform the procedures. It should be a big and revealing day.

Pray that it goes as well as Friday. (But, not quite the same. I don't need any more doctors to inspect my chest, and then comment on my physique, if you don't mind.)

I Can't Wait!

After living through four and a half weeks of weekend custody of our children, (they have been staying at my parents' house each Monday to Thursday) Scott and I are delighted to report that our little ones are finally coming home! Today, they will end their ridiculously long sleepover and be residents of our home once more ... well, at least until the next surgery.

We are so excited!

Decisions Are the Worst

Does anyone remember "Girls Just Want to Have Fun?" It's a super-awesome (not very good) movie from 1985 starring Sarah Jessica Parker and Helen Hunt. When I was a teenager, my friend, Heather, and I watched it almost every day. If you haven't seen it, you could pick up a copy for about $7 ... or you can call me and I could recite the whole thing for you.

Anyway, there is a scene in the movie in which a very spoiled high school girl complains about having to choose from among all of the items in her very amply supplied closet. She rolls her eyes, thrusts her hands onto her hips and says: "Uhh. Decisions are the worst."

I couldn't agree more.

I have spent most of today on the phone ... with doctor's offices. In case anyone wanted to help me keep track of things, I have the following appointments:

• Reproductive Specialist: 3-17
• Plastic Surgeon: 3-19
• Oncologist: 3-22
• Internist: 3-24
• Gynecologic Oncologist: 3-25
• Gynecologist: 3-26
• Surgery: 3-30

Eew. Also, I am trying to wade through all sorts of information that I never wanted to know this much about. (I just ended a sentence with a preposition. But, I have cancer. Deal with it.)

Should I have my ovaries out? I'll have all sorts of health issues, then. Of course, if I don't, I might get cancer again. So, which is better, heart disease and osteoporosis or cancer?

Should I try to freeze my eggs? I'll never be able to be pregnant, again, but we could use a surrogate. Sounds like a good insurance policy, right? But, in order to mature my eggs, I'll have to be on drugs to increase my estrogen levels, which could feed any cancer cells left in my body.

Should I see my regular OB/GYN for the surgery or a specialist?

Should I have a nap, or watch a movie? Life is full of tough choices.

But, to cheer me up, my siblings have been wearing these "Cancer: 0, My Sister:1" shirts.

We special ordered them for maximum awesomeness.

Aww. Aren't they cute?

Thumbs Down for the Oncology Visit

I've been kind of a slacker about updating everyone, here. I just don't feel very motivated. I'm not having much fun, even though I know that I should be. I mean, I'm using my vacation days to sit here and watch the fluid accumulate in my back. I could have gone to Barbados, but this is way better.

Yeah.

But, it was kind of a big week. We finally met the Oncologist ... and the verdict is that the visit stunk.

I'll start from the beginning, shall I? Before we even made it into the building, I looked at my mom and proclaimed that "I don't want to go in there." Everyone was looking at us, presumably trying to figure out which one of us was the cancer patient. But, then I stood back from the door to let my mom open it. (Most doors are still too heavy for me. Lame.) And then, everyone knew. And they watched me. And I could hear their brains trying to figure out why the young person is visiting the cancer building. And they were all wearing scarves on their heads and they all knew each other and they were talking about their latest radiation treatment or their vomiting from chemo and I wanted to run.

But, I didn't. Instead, I sat with Scott and my mom in the stupid waiting room for an hour. An hour! And I don't do very well in chairs, yet. My back is still learning how to cope with the missing muscles, so I get knots pretty quickly. Also, there was nothing good to read. The newspaper that Scott found was three weeks old. My mom went on a hunt for a good reading material and found a copy of Oprah's magazine ... from Spring of 2008. Did you know that big purses are soon going to become popular? Well they are. Prepare yourself.

The wait wasn't without entertainment, of course. Besides the constant prattle of people comparing their treatment side effects, my name was called twice. Each time, I figured that I was going to be shuttled to an exam room. Wrong. The first time, someone from the billing office wanted to talk to us about insurance and how we're currently 571 dollars away from reaching our deductible. Humorous. That shouldn't be a problem since we recently saw the bills from the plastic surgeon and the hospital. They were $12,000 and $55,000, respectively. And that doesn't even include the surgeon's fees, the anesthesiologist's fees or the entire second surgery. I'm a very high maintenance girl.

The second time they called my name, I got up to go and the woman at the desk said: "Oh, they're not ready for you, yet. Dr. Petryk just wanted me to tell you that he's sorry that he's running late. It will be another 15 minutes." So, we continued to stare at each other.

When we finally got to see the doctor, things didn't really improve. The one highlight was that he said that he is hoping we can avoid chemotherapy. We won't know for sure until the oncotyping comes back. (That report will have, among other things, scores listing my prognosis for the next ten years if I do nothing else and my prognosis if we add chemo.) Dr. Petryk told us that there is a greater risk of getting other cancers, specifically leukemia, once you have gone through chemo. It's not a huge number, only 2%. But 2% looks very different for someone who is only 33 with a low expected benefit versus someone who is 70 with a higher number.

So, he would like to put me on Tamoxifen, the drug that I will take for five years and will put me into fake menopause by blocking estrogen from binding to the receptors, or something like that. (It's very hard to keep all of this straight.) I will have hot flashes and whatever else goes along with that process. At my age, I haven't really done much research on menopause, naturally. Also, we have a big choice to make.

Because my tumors were so highly positive for estrogen receptors, we know that it is estrogen that feeds them. While Tamoxifen will help, he wants to do more. And the options are Lupron, which helps to shut down estrogen production, or taking out my ovaries ... and he recommends the latter. Besides the fact that the oophorectomy (which is a ridiculous word) is the best course of action for my current tumors, even considering that early menopause carries increased risk of ostereoporisis, high cholesterol, dementia and heart disease. There is also the genetics part. Right now, I am at a 10% greater risk than the average woman for developing ovarian cancer. If the genetic tests come back as positive, then that number jumps to 40%. Removing the ovaries drastically lowers this number, but doesn't completely eliminate it. There is tissue in the abdomen very similar to the ovaries, and it is possible, then, to develop peritoneal cancer. But, this is a very low risk. So, it probably makes the best sense to get rid of them.

We were prepared for this. From the very first doctor's visit, back on February 4, we knew that my ovaries might need to come out. We knew about the Tamoxifen. We, likewise, knew that children were out of the question for at least five years. But we thought that, should we choose to expand our family, we would be able to do that once I was done with this course of drugs. Wrong.

Scott asked about my uterus, seeing the panic in my eyes and knowing very well where my brain was going with all this. (Theoretically, since they are taking my ovaries, but not the uterus, I should be able to carry a child, if we froze my eggs, right?) Wrong.

Even if we go the Lupron route, thus preserving my ovaries, I should never again get pregnant. Carrying a child would increase my estrogen to dangerous levels, thus making it very likely that I would have a recurrence of cancer. I suppose that if I was 25 and had no children, this might be a different decision. But, I have two lovely babies and I want to be around to watch them grow up. I want to help them fumble through their teenage years. I want to watch them plan their weddings. I want to be a sounding board for them as they weigh out the options of different job offers. I can't do all of that if I lose my fight with cancer ... and that means no more kids. The doctor held my hand and offered me Kleenex. I cried. My mom cried. Scott helplessly watched us crumble.

So, that sucked.

Thumbs down for the cancer building.

Thumbs down for the stupid outdated magazines.

Thumbs down for telling me I have low iron and hemoglobin levels and then taking six vials of blood. Isn't that counterproductive?

Thumbs down for the ovary removal.

And a big thumbs down for no more children.

But let's not dwell on the negative, hmm? I would like to offer an enormous thumbs up for all of your support. Thank you for all of the flowers. Thank you for all of the meals. Thank you for the books and movies and cards and phone calls and comments on the blog.

But most especially, thank you for the sweets. Last night, Scott asked me if I'd like a second helping of dinner. I said that I would, but that I'd refrain in favor of saving room for extra dessert. Then, I asked him if he thought that it might expedite my healing to alter my diet to a strict combination of bars, cookies, cupcakes and brownies. He didn't.

Killjoy.

Baby Steps

Scott told me yesterday that every time someone asks him how I'm doing he tells them that I'm "getting better every day." Finally, he realized that this might not be the case, so he decided to ask me. I was kind of puzzled as I tried to answer.

There certainly are a lot of things that I cannot do. I am definitely still in pain (plus I'm off the narcotics. Boo.) But, as I look back on the last three (almost) weeks, I am reminded that I have come an awfully far way since February 15.

I'm sure that many of you have accomplished really impressive things in the last few weeks. Perhaps you helped a child reach a milestone. Maybe you had a huge presentation at work. Or possibly, as I had planned to be doing today, you helped make an auction a wonderful success, even in this recession.

I haven't done any of those things lately. But, I have compiled a sizable list of embarrassingly insignificant accomplishments. Prepare to be impressed ... a tiny bit.

• I washed my face.
• I got dressed (pajamas count as dressed, right?)
• I made myself a peanut butter and banana sandwich. (Yum!)
• I rolled over.
• I wrote a few thank you notes. (But not many. It's hard to sit up.)
• I reached into the kitchen cupboard and got a cup.
• I shampooed my own hair.
• I reduced my sleeping to one nap a day.
• I got out of a chair by myself.
• I got out of bed by myself.
• I lifted my own dinner plate.
• I put on my seatbelt.
• I brushed and dried my hair.
• I went outside for a walk. (Twice!)

It's the little things, I guess. Go me!

Nothing as Planned

What I'm learning about being sick is that nothing goes as planned. Perhaps I should plan on everything going wrong and then I might be pleasantly surprised by the accuracy of my predictions. Ugh.

During surgery, the scalpel slipped and so I have an extra scar from those stitches. It's great, because I really like to look like a patchwork quilt. I'm thinking that I might use that as my halloween costume for this year.

After surgery, I nearly went crazy from itching, only to find out that while narcotics are great for pain management, you might rip off your skin from uncontrollable itch.

When we were getting ready to leave the hospital, we got the call that another surgery would be needed. The day we went in for that surgery, we missed the window and had to start all over the next day.

All of my skin is peeling off, like I've been terribly sunburned. Of course, I haven't. Also, (of course) I'm not allowed to use any lotion close to any of the incisions. This isn't really a problem, because I hardly have any incisions. I mean, besides the four on my front, the two holes from the drains on my sides and the six to seven inch scars on either side of my back, I'm pretty much incision-free.

A couple of weeks ago, some of my cancerous tissue took a little trip to a lab in California. (I didn't get to accompany it.) This location is the only place that does breast cancer oncotyping, a test that helps determine the benefits of chemotherapy and the likelyhood for recurrence. We got a call alerting us to the fact that the $3,975 test may not be covered by insurance. Super.

Yesterday, I called California to check in on my vacationing cells. They told me that the test was complete and that a report had been sent to my doctor. They lied, though. Naturally. What the customer service rep didn't know is that the report on my surgeon's desk says that there wasn't enough tissue to test and could we please send some more. Well, sure we could! Thanks for being on the ball and wasting two weeks. It's not like knowing the stage of my cancer and whether or not all my hair will be falling our are important to me. By all means, take your time.

I was really excited to get my drains out, so that I could roll over. I'm a side sleeper and I've been sleeping on my back for two weeks. But, when I got settled in for a cozy nap, I experienced a searing hot pain in my chest. I called the surgeon, thinking that I must have torn something and that I would surely soon be suffering from internal hemorrhaging. They told me not to worry. The pressure of the implant on the stitched muscle tissue is just too much for right now. So, I'm back to my back ... just like an infant. No one has offered me a pacifier, though, I observe.

When I went to the plastic surgeon on Monday, he told me that I'll be in sports bras for another month and that I might want to buy some more. (I've been using the hospital issued bras, which are not particularly awesome. Plus, one of them is stained with iodine.) But, did you know that front closure sports bras are a very hot commodity? Well, either that or no one likes them. I'm not sure, but the fact remains that it is nearly impossible to find any. My good friend, Jamie, took me shopping yesterday in search of this personal item which the doctor said "you should be able to find at any store like K-mart or Wallmart." Wrong. Also not at Target or Kohl's. Well, if you wear a size 42 you can find them. But you better not be too picky, because there is only one style and color from which to choose. We ended up buying some expensive ones at a sporting goods store. We also ended up getting me stuck in one of the bras, but that's another story.

All of this shopping, while a fun diversion, was a lot of effort for me. At the last store, I noticed a bulge in my back. Guess what that is? A build up of fluid! So, I have the drains out, but there is still too much fluid for my body to re-absorb. I was told that this might happen. Actually, I was told that it was probably not going to happen ... but you know, nothing goes as planned. So, I think that I'll have a doctor drain it with a syringe and needle. I'm sure that it will be pleasant. I'm probably going to eat truffles during the procedure.

So, that's pretty much it. I'm just sitting here watching t.v. and reading books. Scott and I are having lovely, quiet dinners together and watching all sorts of movies. I get a nap every day, lots of delicious treats and rarely bother to get dressed.

This would be a really nice vacation, if it wasn't for pesky cancer.

Way to ruin everything, cancer. I'll get you for this!

Goodbye, Stupid Drains!

Hooray, Hooray, Hooray!

My drains are out! My drains are out!

No more tubes. No more feed bags. No more bulbs. I hated them ... and they're finally gone! For the last two weeks, I have had tubes sticking out of the sides of my body to drain off excess fluid in the surgery sites. As a result, I have been sleeping flat on my back, a position of which I'm not particularly fond. A few times a day, Scott had to empty the drains, by pulling on the tubes and dumping the contents that collected at in the bulbs. I was also not fond of that process. I think that my good friend, Sarah, described it best when she simply said: "blech." Yes, blech. That about sums up the whole thing.

As a combination of the momentous day and the fact that the kids were here this weekend, my spirits are a bit lighter than they were the last time I posted. Our children are wonderful people ... and so is my plastic surgeon for pulling those gross tubes out of me.

Yeah for today!