A whole 'nother plan

The U.S. stock market and I have something in common: something new happens every day. Things have been changing so rapidly from day to day that I can barely keep my feet on the ground. Even as I write this latest entry, I wonder if I should just wait and tell the story a month from now. It might be a completely new plan tomorrow.

I read the last couple of weeks' entries and was amazed at how everything has so rapidly gone from one treatment plan to an entirely different one.

One thing I'm learning is that you've got to be FLEXIBLE when dealing with this whole cancer thing. I mean, ridiculousl y FLEXIBLE. It was only last week (seems like a month ago) that I was visiting Swedish Hospital about an alternative radiation treatment. Slightly over a week later and radiation is out the window for months and I'm looking at chemo and more surgery.

And I'm getting lectures--e r, I mean helpful advice--from a few people intimating that I need to handle things better. I don't want to be rude, but let me tell you something, people--I am really laying myself out here with this blog. I am sharing my feelings and sometimes they aren't always "appropriate." Yes, I even get a little emotional when I find out that I'm going to have chemo and another surgery when I wasn't expecting either one. I don't think that's weird or un-Christian or anything. It's just human. If there's really anybody who can go through these things without some kind of emotional trauma, I'd like to meet them. I really would. Because then I'd like to punch them in the face. Ha, just kidding.

My husband and I were talking today about all of the things that people tell you when they learn you have cancer; the advice, the stories, the referrals, you name it. I've already mentioned it once in this blog, but it bears repeating.

For myself, the best thing anyone can say to me is, "I'm really sorry you are going through this. I will be praying for you. If you need someone to talk to, I will be here for you." And maybe a hug. That's it.

I don't need to hear about all of your relatives that had cancer and how most of them died from it (or from the chemo), or how I should get a mastectomy instead of a lumpectomy, or what kind of plant found only in the desert of Mexico will save me if I'd only go down there and get it, or even the subtle implication that somehow I did something to make myself get cancer (maybe I did; maybe I didn't). Did I sit too close to the TV watching 60s sit-coms when I was a kid? Maybe it was drinking too much soy milk the last year and a half (thinking I was doing myself a favor).

And then there are the people (mostly Christians) who give you the ol', "The-Sun-Will-Come-Out-Tomorrow-pat-on-the-back" speech. Sometimes I wonder if that's really how the person would handle it if they or someone they loved were diagnosed with cancer.

I didn't even realize how horrible some of the things said to me were until I repeated them to my husband and he freaked out. But, as I said to him, I look at these people and I realize that--in their way--they are trying to help me. In some weird way, they may be trying to identify with me ("Oh, my aunt had cancer and she beat it. Well, except that it came back 15 years later and she died from it, but she had those 15 years, you know."). Whaddya gonna say?

The reason I'm mentioning all of this is because I'm learning so much about myself through this whole thing. As I told someone today, it is bringing me face to face with myself. For example, my husband and I were at the cancer center yesterday. And most of the people in the waiting room were older than me and a lot of them had hair that was down to the nubs or patches of hair falling out.

And I did not want to accept that I could be looking like that in a few weeks. I just did not want to accept it. I decided right then and there that I would not go out looking like that--I will cover my head with a scarf or a wig or something, but I don't want to walk around looking sick.

When I pondered on it, I realized that I was saying to myself, "I'm not like them." But who am I kidding? I am exactly like them (or will be soon)!

Which reminds me of a blog I read recently. The author said that she would put on her nice work clothes (heels and all), make-up, and wig before she would go for her chemo treatments. She did it so that she wouldn't sit there feeling like a sick person. And it worked for her. I thought it was quite ingenious.

So let me get to the events of the past couple of days. On Monday, my husband and I met with my surgeon (the one who did my lumpectomy 6 weeks ago). He talked to us for nearly an hour.

He said that the pathologist who read my original surgical report is very good and that he has worked with him for 15 years. He told us about a case this pathologist worked on that was disputed by a University of Washington pathologist. In a nutshell, my surgeon's pathologist asserted that the patient's condition was attributed to an inflammation and the UW pathologist said it was cancer. The dispute went all the way to the highest ruling pathology entity in the country--and my surgeon's pathologist was vindicated. So he wanted us to know that this guy is not a lame brain. But his report was disputed by the Swedish Hospital pathologist, who is saying that the margin around my tumor is not big enough. And when there's even a question (albeit a half a millimeter difference of opinion), you err on the side of caution. Which is why I am having a second surgery.

I told my surgeon that I was shaken, but that I would rather know this now and deal with it. I have come to terms with it. So I asked him if I should consider a mastectomy since I now know that I have a higher recurrence score than anyone originally thought.

He still said that I have an excellent prognosis (I needed to hear that) and that he would do a mastectomy if I wanted, but he went on to say that a lumpectomy with radiation would give me the same prognosis. We agreed to set the surgery date and I told him that I would get back to him with my decision after I'd met with the oncologist and asked more questions of him.

I did tell him that if we do another breast conserving surgery, he was welcome to take AS MUCH as he wants--MORE THAN HE NEEDS. I reiterated it to him several times. I told him that I did not care how it looked afterwards. He said, "Don't worry; I'm not going to just skim the edges." I said, "Good, because I don't want to go through this again." (God willing.)

I also asked the surgeon if he could insert the porta-cath thingy (used for chemo) at the same time as the breast surgery. That way, I would not have to go back in for a third surgery to have it placed. He said he could do that.

Then he proceeded to tell me that it carries a risk of a collapsed lung (which has only happened 3 times since he's been doing this) and bleeding and infection (like any surgery). At some point, your eyes just glaze over and it all becomes quite blase. "Yeah, sure, collapsed lung . . . whatever."

My surgery was set for the end of the month--two weeks away--because there was no room at the inn--er, I mean, no time on the surgery schedule until then. But even that has changed since Monday. Today (Wednesday), I received a call from his assistant asking if we could move the surgery up a week. Really, I want to get it over with as soon as possible, so I agreed.

The only hesitancy on my part is that I had just spent time re-arranging my work priorities so that I could get things done next week prior to surgery. Now it looks like someone else will have to fill in for me and it will be a big hassle. But, as my husband said, "What would they do if you were hit by a truck?" Exactly.

The next day (yesterday), my husband and I met with Dr. J., the oncologist, for my second visit. I decided that this meeting would be the acid test of whether or not I would stick with him. I just felt we didn't hit it off very well the first time. I was really dreading the appointment.

I realized that I like my surgeon because he says encouraging things like, "You have an excellent prognosis" and "You're going to get through this, Dana." At the oncologist's office, the conversation focuses on statistics and rates of recurrence. I feel like a cold, hard statistic instead of a human being. Granted, we're just starting out, so maybe that will change.

Anyway, I was all prepared and had a sheet full of questions written down. I told Dr. J. right away that I had heard from Dr. K. (the radiologist) that he was planning to recommend chemo to me. He said, "Well, I said that I wanted to talk to you about chemo." That calmed me down a bit (good psychological tactic on his part), becauseI felt that I was still in control of my options.

Dr. J. told me that he was surprised at my Oncotype score and said that it might have been higher because I am pre-menopausal. Apparently, pre-menopausal women usually have more aggressive cancers, although my tumor stats (excluding the Oncotype score) didn't show a very large tumor (8mm) or aggressive tumor characteristics.

So I'm in this gray area where they don't really know for sure if chemo will benefit me, but it might. The way he put it was this: suppose there are a group of 100 women with your cancer. Seventy of them won't get a recurrence. But if they take chemo, another five women won't have a recurrence (75). So if you're one of those five extra women who took the chemo and didn't have a recurrence, it's kind of important to you.

I told Dr. J. that if I had a recurrence five or ten years from now, knowing that I could have done more to prevent it, I would regret it. I need to know that I'm throwing everything I can at this because I don't want to go through it again.

He said that he was recommending four rounds of chemotherapy and he told us the drugs he would recommend: Taxotere and Cytoxin. He said they would be administered separately, once every three weeks.

He suggested that I take a week off work for each treatment because I would feel fatigued from the lowering of my red and white blood cells. He said that I shouldn't get too sick and besides, there are drugs for that. But I would also be at risk of infection, particularly the week after the treatment.

I asked plenty of questions until I ran out. I thought of more after we left.

I'm scheduled to see a female oncologist at Swedish Hospital for a second opinion at the end of the month (which I told Dr. J. about), so I'll have a second chance to ask more questions--especially now that I've read about Taxotere and got scared out of my mind.

I probably shouldn't read this stuff. It's like reading the little insert that comes with every medication (you know, the one that tells every side effect known to man that could happen to you: "Use of this drug may cause your face to turn khaki-green, your nose to fall off, and an irresistible urge to howl at the moon. If hair sprouts from your forehead, discontinue use.") That kind of stuff.

Today I broke the news to the school superintendent about my upcoming surgery and chemo. I explained to him that I would be taking a week off here, a week off there. I told him that I hated to leave projects undone (it really does bother me), so we discussed contracting a graphic designer or hiring a print shop to lay out the upcoming newsletter.

He told me to do what I had to do and people would fill in to help out. He asked if I had enough sick time and of course, the answer is no. I will use up my sick leave and vacation time and submit a request for shared sick time (donated from co-workers who have extra time). After that, I will have to take unpaid leave under the Family Medical Leave Act (up to 12 weeks are offered so that I won't jeopardize my insurance coverage).

I then told him that I would be sporting a new look when my hair fell out and he seemed amused. I guess he was picturing me bald. I hastened to add that I would probably be wearing a wig. Now I'm worried about my eyebrows. For some reason, losing my eyebrows bugs me as much as losing my hair. They've just always been there; what if they don't grow back?

Edited to add: I just found the answer to my eyebrow dilemma here. I had no idea this kind of product even existed! Which is better: pasted-on eyebrows or Greta Garbo penciled-in eyebrows? Hmmm . . . maybe none at all. :~(