Dear ... Everyone Who Wants Me To Do Things

Dear ... Everyone Who Wants Me To Do Things

Dear Everyone,

I am tired.

I am very tired.

And I am tired during almost every minute of the day in which I am not asleep.

I try to do my job without yawning and although mornings are often blurry, I don't let my children leave the house with syrup smeared across their faces. But still ... I nap at least three times a week and have contemplated whether or not it would be a misuse of sick time to go home and sleep during the work day.

Supposedly, going under general anesthesia results in several months of fatigue. I went under three times. Menopause causes hot flashes, night sweats and insomnia. Anxiety and depression are known to hinder a good night's sleep. And Tamixofen, the cancer drug that I will take for five years, has tiredness as a side effect. So, I guess this shouldn't be shocking to me.

But it's been eight and a half months! I am a zombie.

Also, I'm sad. And pretending all day that I'm not is exhausting.

To those of you who are wondering if I'm okay, I am. I'm healthy. I don't have cancer. I'm not undergoing any horrific treatments and don't have any surgeries scheduled. But in case you were unsure, it is not very helpful to say: "Are you all right? You don't look good." You can all just stop that. No one wants to hear that they look like crap.

Plus, the next time someone says that to me, I will either cry or smack them. I'm not saying which ... it's a surprise.

This is Revolting

This is Revolting

I'd like to begin this post with an apology to my husband. I'm going to be making fun of him, but it would be much harder to make my point without doing so. Not impossible, but I don't feel like working too hard. Plus, it's funny. Here goes.

I am not a sweaty person. I mean, I glisten like all girls, but I rarely drip.

The same cannot be said for Scott. "Glistening" is an enormously inadequate word to describe his perspiration situation. Profuse is perhaps better ... also abundant, copious and overflowing. For example, he has a stand for his bike in the basement so that he can use it during the winter. He had to drape towels on both the bar and under the bike to contain the puddles. Ick. A smart wife would avoid that area of the basement for feaf of falling into an unmarked quagmire of sodium chloride. She might even take it a step further and suggest that her darling spouse reserve biking for the warmer months, when he can just drip down the street. But, I love Scott. And for some reason that I totally don't understand, he loves to exercise. So, we do the best we can. Plus, street sweating is barely an improvement on basement puddles, because he will eventually come home. When this occurs, I am faced with a creature that vaguely resembles the one who left a few short hours ago. He's still tall and handsome, of course, except his face and neck are white. I don’t mean white, as in lacking melanin. I mean that he is white, as in coated with an unnatural film of salt that God did not intend. Yeah, I’ll give you a minute to digest that. Eeew.

The point is that I am not like this. Even when I used to do Tae Kwon Do, I stayed moderately dry. Kicking, punching and breaking boards with my bare hands were no match for my pores, which are quite good at retaining water ... like the rest of me.

However, I have recently been giving Scott a run for his money. The days are not so bad, but the evenings are gross. Every 30 minutes or so, I have a hot flash. This results in feeling that my own body is an uninhabitable inferno. In a panic, I rush to get my hair off my neck. Then, I hurry to minimize my clothing. Pant legs get pulled up and socks get tossed aside. In the comfort of my own home, I surrender to the sensation that my limbs are on fire by draping my arms and legs all over furniture, creating odd angles and positions that should only happen if you have broken several body parts and are in traction.

Then, I flail around trying to find my handheld fan. That's right. I have a handheld fan. It's from Brookstone and it's awesome, a little embarrassing, but awesome. I highly recommend it to all my friends ... in 20 years when they go through menopause. I put the fan right in front of my face, so close that I sometimes hit my nose with the "finger safe blades." And then, I sigh.

Since the weather has gotten beautiful, I have added a new move to my routine. I call it the kleenex wipe down. I've started to drip, in rival quantities to my dear husband, and it's disgusting. I could be chilly, cuddled under a blanket while watching a movie and then ... all of a sudden, I start sweating like a pig. I glisten enough that I need to mop off my forehead and some less easily accessible parts of me. Then, two minutes later, I'm cold again.

Luckily, my symptoms are in the moderate range of discomfort. Earlier this week, my doctor asked me if I have night sweats. "Yes," I replied. She asked if they wake me up from sleep. "Yes." Then, she asked if when I wake, my shirt and sheets are soaked through thereby necessitating a bedding and pajama change. Thankfully, I answered: "no."

So, I guess it could be worse. Still, though, I say: "Suck it, menopause."

The Next Round

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?

News: Some Awesome and Some Mildly Sucktastic

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 or 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 my daughter, 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.

Decisions Are the Worst

Decisions Are the Worst

Does anyone remember "Girls Just Want to Have Fun?" It's a super-awesome (not very fantastic) 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

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. P. 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. P. 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 that is 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. 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

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

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!

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!

This Blows

This Blows

So many of you have mentioned that I am positive and spunky and strong.

Thanks.

I suppose that you're right ... most of the time. But, I'm bored. I'm tired of having to have help from everyone and I'm tired of being in pain and I'm tired of these stupid drains. I'm trying to keep my spirits up, but ugh.

Suck it, Cancer.

Surgery went well on Tuesday. As the plastic surgeon accurately predicted, there is so much other pain that I don't even feel the incision from the latest slicing. The pathology came back and showed no cancer in the sample. They did find the clip and the tracks from January's biopsy, but no cancer cells. My surgeon tells me that this is good news.

There were, indeed, two tumors. One that we knew about (but that was all removed during the biopsy) and another that they didn't even see before the mastectomy. This does not great confidence instill. I would have felt much better if they HAD found cancer on Tuesday. At least we would know that we have clean margins and that it is out. But, instead we have to trust that ALL the cells ... every single one of them ... were removed in the exploratory part.

What else don't they know is in there?

Frightened, but trying to stay strong,

Liz

The Battle Continues...

The Battle Continues...

Good evening everyone, Scott here.

I know that this will disappoint many of you, as my writing/blogging skills are no where near Liz's caliber, but I am filling in as a ghost writer for the day. Don't worry, everything is fine with Liz. She is just a little tired after another long day and asked me to fill in for her. So here is goes...

Oh, wait, before I get into today's events, I need to share something. 

 

I was pissed yesterday. 

 

Actually, that is an understatement. I was more than ready to wallop someone for making Liz go through another procedure. While she is extremely strong, and doing very well (all things considered), I hate to see her in pain. I couldn't comprehend how one has a mastectomy, gets the pathology report back that says there are clean margins, and then get a call saying there may be some more breast cancer in there. ISN'T THE POINT OF A MASTECTOMY IS THAT THERE IS NO MORE BREAST TISSUE?!?! Thankfully for everyone at St. John's Hospital and the Maplewood Surgery Center, I had a day to calm down (complaining to several of you also helped - so thanks to those of you that had to suffer through my tirade yesterday).

OK, on to today's events. We started the day at the Breast Center at St. John's hospital where the head of the Radiology Department performed the ultrasound on Liz. Almost immediately, she was able to locate the infamous "missing marker" from the day before. She gave Liz a quick little spiel about how she needed to insert a guide wire into her breast and there was a possibility that she might puncture the implant (thanks for calming her nerves Doc).

From there, we went to the surgery center where Liz's surgeon talked to us about what was going to happen (and continue to "calm" our fears by telling us there was only a 10% chance that she was going to puncture the implant). Before the surgery, she went back to the Pathology Department to review the breast tissue from last week and the location of the tumor they identified. If I heard the surgeon correctly (which it is entirely possible I did not), she feels that the tumor from last week was in a different location than the marker they placed during the original biopsy. I interpret that to mean that there were in fact two tumors. The location of the original tumor was in the sub-cutaneous tissue near the bottom of Liz's breast - in her chest wall really (this is the one the surgeon went after today). The one the pathologist found last week was in a totally different location and never showed up in any of the 75 ultrasounds, 23 MRIs, 81 mammograms, or 52 gamma-scans Liz has had over the last 7 months. We won't really be able to confirm the number of tumors until after the final pathology report.

After surgery, the surgeon told us that she had to take a little skin and tissue down to the implant (we said a little prayer of thanks before dinner tonight thanking God for making today an implant puncture free day). We now have to wait until the pathologist can review this specimen to ensure that there are clean margins around it. We hope to get those results back this week, but we may not hear until next week. We are praying everything comes back clean...

Pop Quiz

Pop Quiz

How many of the following things can you do?

• Wash your hair.
• Use a soap dispenser.
• Buckle your seatbelt.
• Sit up after a nap.
• Pour a bowl of cereal.
• Put on a shirt.
• Tie your shoes.

Show off.

False Alarm

False Alarm

Sadly (and happily) we were not finished with the ultrasound in time to make our time slot in the operating room, this morning.

So, we go in again tomorrow.

This is nice, because one week after major surgery, what you really want to do is be shuttled between different waiting and procedure rooms.
It's super-fun.

During today's ultrasound, the radiologist could not find a tumor. But, she "thinks" that she found the clip, which is the little bit of metal they put in to mark the tumor for last week's surgery. If the clip is, indeed, there, then the tumor may still be there. Thus, the one removed during the mastectomy may have been a second one. So, just to be safe, they are going to take "a bit more."

My plastic surgeon said, and I quote: "with all of the pain that you're in right now, the discomfort from this surgery may even go unnoticed."

Yeah. We'll see.

Possible Surgery Today

Possible Surgery Today

In order to have the radiologist who found the cancer in the first place, tomorrow's procedures have been pushed up to this morning.

My appointments are:

• 9:45 check-in
• 10:30 ultrasound
• 11:30 surgery, if we make it. Otherwise, we'll have to go back later this week.

Suck it, Cancer.

They Spoke Too Soon

They Spoke Too Soon

We got a call from one of my surgeons. I hate her now. She is a really good doctor and has EXCELLENT bedside manner, but I think I might have to hate her.

When the pathology report came back, it did show that the cancer was removed with clean margins all around. However, the pathologist found the tumor in a slightly different place than was expected. SO... I have to go back in on Tuesday for another ultrasound (the fifth one, if you're counting) to see if that was the same tumor that we had originally seen, or a new one. If it was the same one, then my recovery can continue at the achingly slow pace at which I was already suffering.

If it is a new tumor, then we can relax and panic with renewed fervor. There is relief in the fact that a malignant tumor was successfully removed on Monday, with the rest of the tissue. But, there still may be some tenacious cancer cells hanging out at the original site. In which case, I would go back in for a surgery that my doctors call "an unfortunate inconvenience." Um, yeah.

We'll know more on Tuesday.

Please pray for me.

Please pray for my family.

Please pray for my surgeon ...

• that she locates and removes all of the offending cells
• and that she recovers quickly when I wallop her with the ultrasound wand.

Update

Update

This is Liz. I am displeased to announce that I am still in the hospital. We were planning an afternoon departure, but it is now 4:30 and I have spent the last six hours lying here watching two pints of blood drip into my veins. I'm not having a super-awesome time, but I do have good news: the pathology came back today and the surgeon got out all of the breast cancer. Clean margins all around! So have a beer for me. I doubt that the hospital looks very favorably upon the combination of alcohol and narcotics. I could be wrong, I suppose, but that almost never happens.

My pain is rotten, but manageable (when I'm holding still or am asleep.). I'm now on my third round of narcotics, because of nausea and horrible itching caused by the first two. I'm also on my third i.v., because the first two became blocked with clots which, apparently, inhibits the efficacy of the medication transfer. I have internal and external sutures on my back, my front, and my side. Also, inexplicably, at the top of my chest, where the surgeon's scalpel slipped trough the skin while removing the breast tissue. We're watching my temperature closely, because it is currently spiking AGAIN. Two nights ago, it climbed to 102.2, which no one found to be an excellent report.

I'm pretty much fed up with people coming to check my vitals, re-stock the room, ask me if I'd like margarine or butter on my roll, and offer to pray over me, but instead stare at me as though they wish to be entertained. I am also tired of being unable to do things for myself. My catheter is out, so I can go into the bathroom by myself (well, myself and my beautiful i.v. pole.) But, I don't have the strength to flush the toilet. I can type this post, but the computer is much too heavy to lift off my lap. I think that it's safe to say that I am not my usual chipper, spunky self, although I do take comfort in the fact that, based on all of your comments, I have all of you snowed.

Go me!

Hopefully, we will have good news after the blood transfusion and will be at home sometime tomorrow. We'll keep you posted and let you know when we are ready for visitors.

Thank you for all of your support.

Liz and Scott

The First 24 Hours Out of Surgery

The First 24 Hours Out of Surgery

We officially now have 24 hours post op under our belts! There has been a great deal of pain, but Liz is doing remarkably! Her doctors have checked on her numerous times, and they have all said that everything is looking really well.

She is still very tired, but that is because she is loaded up on morphine. The doctors keep telling us that she won't remember anything of the last two days, but I don't buy it for a second. Last night at about 3:30 AM, I called Liz's nurse "Amanda" and Liz was the one that corrected me to say that her nurse's name was "Amber." Amber was her third nurse since we got out of surgery. Great, just what I needed, one more thing to prove that Liz is smarter than I. Even after major surgery, I don't stand a chance against her.

Between the breathing tube that was in her throat during surgery, and the fact that her chest hurts every time she breathes, talking is very difficult for her. I know that many of you want to come down and see her, but I think that if we can wait until she is home, that would be best. Besides, Liz has already told her mom, "If I could move my arms, I would punch you in the face." That was just because Nona wouldn't scratch Liz's face hard enough. I can't imagine what she will do to me if I make her talk more than she wants.

Thanks for all the prayers, calls, emails, and overall positive good vibes. You have all been amazing!

O.R. # 10, Treat Us Well

O.R. # 10, Treat Us Well

First, I want to apologize for the delay in getting this posted. I know that many of you are anxiously awaiting an update. Just so you are no longer in suspense...things are looking great! Also, this post might seem very boring, but I want to get as many details down as I can remember.

We started our day bright and early at 5:00 AM. O.K., bright isn't the right word since it was still pitch black out, but you get the idea. Liz wanted to make sure that her legs were shaved, toe nails polished, etc. She even tried to teach me how to wash and condition her hair so I could do it after we got home. Did you know that you don't use conditioner on all of your hair like shampoo? Seriously, who knew?!?! She also tried to teach me how to shave her legs, but I told her that she was going to have enough cuts and scars after today and that there was no reason to add any more.

We got to the hospital at 6:30 AM, and Liz was taken back almost immediately. Nona, Liz's mom, joined me in the waiting room at 6:45 AM. While we waited to be able to go back and be with Liz, our under cover agent snuck out and gave us a status report. Dr. Nick, surgeon and friend extrodinare, had a surgery here this morning. Before his surgery, he tracked Liz down to make sure that she was doing well.

Finally around 7:30 AM, Nona and I were allowed to see Liz. In typical Liz fashion, she was keeping the medical staff entertained in back. We didn't get to spend too much time with her though, as she still had to go for her sentinel node biopsy.

Once Liz was taken to Radiology, Nona and I staked out a corner of the waiting room. We were sitting there for about 45 minutes when Liz came walking around the corner. Apparently the individual tasked with taking her from Radiology to Prep-Op didn't know where she was going, and got a little lost. Don't worry though, Liz didn't use that as an opportunity to bust out of the hospital and jump in a taxi.

After getting her back to Pre-Op, her doctors showed up to discuss the the day. All in all, 7 different professionals came in and examined her, wrote on her body, asked her for her name and date of birth, or did something else that was in preparation for the surgery. During one of the lulls between docs, the three of us said some prayers. While both Nona and I were shedding tears, Liz remained strong and stoic. She is a rock!

Shortly after 9:30, they came to take her to surgery. Right before they were ready to wheel Liz out of the room, the nurse anesthetist asked Liz the age of our kids. She started to answer and then stopped, looked at the anesthetist, and said, "Did you just slip me something?" He smiled, and said that he did in fact give her something to relax when she wasn't looking. Her response, "Nicely done Matt. That was very sneaky." Cracking jokes until the very end - awesome. It was at that point that they wheeled Elizabeth to Operating Room #10. The time was 9:45 AM.

At 10:30, the volunteer in the surgical lobby came over to inform us that surgery officially began 10:15 AM. It was at about this time that our first visitor showed up - our neighbor Jim! Jim sat with us for a little over an hour. Then around 10:45, Sister Mary Denise from Visitation showed up (she is still with us now, praying, laughing, and pretty much doing anything to keep us distracted).

Nick found us around 11:30 to let us know that Liz was doing fine. A little over an hour later we got out first great news of the day. Dr. Schmidt came out to tell us that the mastectomy went wonderfully. The sentinel node came back negative, which was awesome, and according to the pathology reports, everything else was looking good. To celebrate the clean node and success of the first phase, Nick took me out for a beer and lunch! Thanks again Nick!

Upon getting back from lunch, Nick checked in on Liz again for us. The plastic surgeons where just completing the portion of the surgery where they move the skin and muscle from Liz's back to her front. The plastic surgeons told Nick that things were going wonderfully.

I have to say that while we are not done yet, it feels like a weight has been lifted off our chests (pun not intended.) Keep up the prayers people, we are almost there!

Here We Go!

This is me.

"This is My Cancer Fighting Shirt."

This is cancer getting trounced.

Despite my growing nausea, I am ready for this.

Throughout the day, Scott will post updates as they become available.

Wish us luck and prayers. If you're not the spiritual type, here's one from Laila. Use it as inspiration, if you like.

May God help the scars not hurt for a lot of your life.

We pray to the Lord,

Lord, hear our prayer.

Amen

What to Say?

I feel like all that I have done since I was diagnosed is talk about cancer. I have had A LOT of doctor's appointments and a huge number of face-to-face and phone conversations with many of you. We have been reading and researching and questioning and consulting. Scott and I are both much more well versed in the ways of cancer cells than we ever hoped that we would be.

But, I feel at peace. I feel supported and loved and uplifted by all of your prayers. I feel powerful from all of the knowledge that we have gained and by acknowledging that this is my battle to fight. My team of doctors (and it is a sizable team) is responsible for taking out the offending cells and doing all that they can to restore my body to health, but I am the one who gets to decide the spirit with which I enter the war. (Isn't it strange to think that my body is struggling against itself? Weird.) I can be depressed and disheartened or I can offer this up and know that I am strong and that cancer doesn't stand a chance. Poor cancer. Good effort, old chap.

Also, suck it.

So, where are we in the process? We have decided on an initial course of action. On Monday morning, I will go in for a sentinel node biopsy followed by a double mastectomy with immediate reconstruction. What does all of that mean?

• The node biopsy will determine whether or not the cancer has spread outside of the breast tissue. If it has, some of the infected lymph nodes will be removed. Of course, we are hoping for a negative result.
• The double mastectomy is a radical step, but one about which we feel very confident. First, it is our best chance to avoid a recurrence down the line. Second, the mass of in-situ cells (the cancer that has not gone beyond the duct walls) appears to be about two inches across. Getting it all out without a mastectomy would be very disfiguring. Third, because it took six months to diagnose this, I want to do all that I can to avoid looking over my shoulder all of the time, wondering if I am really safe.
• The immediate reconstruction will be in the form of a latissmus flap procedure. This means taking some muscle and tissue from my back, tunneling it through to my chest and using it to reconstruct the breasts. Click here if you want to read more.

Comedy break: In case you wanted to know, my plastic surgeon told me that (despite my valiant attempts to sway him) I am not a candidate for the surgery that takes tissue from the abdomen, thus creating a tummy tuck. Boo. Also, he said, and I quote: "if you told me that you wanted your breasts to look exactly the same after surgery, I wouldn't be able to do that, because you are too small." Awesome. Thanks for that. Perhaps you should pump up your bedside manner. I do have cancer, you know.

I have been told to expect to be out for five weeks, and that I will feel "like I've been hit by a truck" for at least the first one. We are doing all we can to prepare for the worst and hope for the best. Thank you for all that you have done to cheer us up when we are tearful and to reinforce our battle stance when we aren't.

But, I must tell you, Laila has trumped you all. She has been busy making cards and signs and valentines for me. My favorite two so far are:

• The note card that reads: "Mom, I am sorry about the cancer. Be mine." One the back, she drew a bunch of breast cancer ribbons.
• And the one that I am carrying with me all the time is a little pink heart. It reads: "Nice try, cancer. But Liz wins the battle. Love, Laila."

So, I have cancer ... but I'm still awfully lucky!

News

Some of you have been waiting for this information and some of you are probably getting blind-sided by it. I'm sorry. I just thought that it would be easier to put it all out there once, than to re-tell the story a million times.

So, the deal is this: yesterday I was diagnosed with breast cancer.

This news has been a long time coming for me, but I guess I haven't really shared it with most of you. I just kept waiting for the all clear, because I was planning to deserve a celebration. But, I didn't get the all clear, and I suppose it is time to share the story. It's terribly long, but here goes.

Last summer, I noticed two lumps in my left breast. I went to my doctor, who thought that everything was probably just fine. I believe that her exact words were: "some women just have lumpy breasts." Right. A month later, I went back. The lumps were causing a bit of discomfort and I didn't buy the diagnosis. They sent me to the breast center at Saint John's hospital where I had both a mammogram and an ultrasound. All results were negative.

Next, I went to see a breast surgeon who also thought that everything was just fine. But, to be sure, she sent me back to Saint John's hospital for a gamma scan. In case you don't know what this is, I will enlighten you. It's kind of like a mammogram, in that you are crushed like a pancake, except that the photos take about five minutes each. Oh, also, you have to have radioactive dye injected into your veins. Really, radioactive. I have a card in my wallet detailing my nuclear medicine exam, on the off chance that I set off the metal detectors at the airport. And, in case you can't picture the severity of this procedure, I will also add that the technician brought the syringe to me in an lead pipe, lest the material that they were about to use to populate my blood stream come into contact with anyone. Very comforting.

After the gamma scan, the technician left the room to develop the photos. She told me that she would be back in a few minutes, at which time she might need to do a few more photos or we would be finished. Instead, she came back with a doctor, who introduced himself as the head of radiology. Super. He told me that the left side (with the lumps) looked fine, but that there was an area of concern on the right. So, guess what then? Another ultrasound and another mammogram. And guess what the results were ... negative.

Great news? Not really. The gamma scan looks at the breast tissue on a cellular level. Since the area of concern was found on the gamma, but not on the other procedures, there was no way to biopsy it. So, I had to wait three months and then come back.

At the end of December, I went back for another smush test, I mean gamma exam. The results were the same. The spot on the right had not grown, which was good, but it hadn't gone away either. So ... more tests. Next, I went in for an MRI. On January 22, I climbed into the horrible tube of claustrophobia known as the MRI machine. If you have never had one, let me tell you: it is loud. REALLY loud. They offered me some headphones, but they also told me that I wouldn't be able to hear the music very well, so I opted for the earplugs.

Oh, also, there was some contrast dye injected near the end of the 30 minute procedure, but no one was in the room with me. So, all of a sudden, while I was not allowed to move, I could feel a foreign substance crawling through the i.v. tube into my arm. It was very surreal, and a bit disturbing.

After that, I got a call from the surgeon. I was expecting the all clear, but no dice. Also, no diagnosis. But, I DID get to go in for another test, which was exactly what I was hoping to hear. I hadn't been in to the hospital for almost two weeks, and I was beginning to miss it. (That was sarcasm, in case you missed it.) So, this Monday, I went back to the breast center for a third ultrasound. Did I mention that I'm only 33? While there, they FINALLY found the lump that I found in July. And we were finally able to do a biopsy.

Phew ... or not. The results of the pathology report show two types of cancer. I have a small area of invasive ductal carcinoma. It is (or WAS, before the biopsies) about the size of a tick tac. I also have ductal carcinoma in-situ. You might think that the invasive is the more concerning of the two; we did. But, the thing is that the invasive kind is easy to see in surgery. It is fairly clear whether or not all of it has been removed. Not so much with the in-situ kind, which is just a cancer that has not yet developed into the invasive category.

So, we are faced with three options:
1. Have a lumpectomy and radiation for six weeks, five times a week
2. Have a single mastectomy and a biopsy on the right breast to find what showed up in the gamma scan.
3. Have a double mastectomy, thereby decreasing the risk of recurrence.

Between the three options, the survival rate is about the same.

Regardless, I will have a sentinel node biopsy and may or may not need an axillary dissection.

Regardless, I may need to have i.v. chemotherapy.

Regardless, I will likely go on some oral chemotherapy which will both halt the spread of the cancer and will put me into menopause for five years. So, no more siblings for Laila and Owen ... at least for half of a decade.

We just don't have all of the information, yet. We go to see a geneticist soon, to determine whether or not I have the mutation that could cause cancer in other parts of my body and that may increase the risk that our children are in danger, too. We go to see a plastic surgeon on Monday.

In short, we have a lot of information to digest, and one HUGE decision to make.

Thank you for all of your support.

With love,
Liz, Scott, Laila and Owen

Do not look forward to what might happen tomorrow;

the same everlasting Father

who cares for you today

will take care of you tomorrow,

and every day.

Either He will shield you from suffering

or He will give you unfailing strength

to bear it.

-St. Francis de Sales