Surgery Scheduled

I'm having the lumpectomy on Friday, Aug. 5. I don't know anything else. I'm waiting for the surgeon to call to answer my growing list of questions. I think he told me at the last appt that I'd be in the hospital two days.

Now that it's scheduled I'm starting to get scared. Before, I put aside worrying until I knew whether it would be a lumpectomy or mastectomy. But after the phone call I suddenly had a tightening in my gut. I'm afraid of anesthesia and staph infections. I know two people who died in different hospitals from staph infections after surgeries that went well.

The good thing that happened: For the last three nights I've slept all night straight through. Lately, I've had a terrible time with insomnia. Even when I take tylenol pm or benedryl. I finally feel rested.

Funny Thing

I forgot all about this, but I just have to share it.

When Luke and I went to Dallas we were in a mall and he got in a line to buy us smoothies while I waited by the escalator. I was wearing a purple shirt with a purple pin on my hat, as you see in the picture Luke posted previously.

As I stood there I hear this man say, "Hey, pretty in purple!"

I look up and this middle-aged man is going up the escalator, but he's looking right at me.

Then he says, "How ya doin'?" Like he's Joey Triviani or something.

I just shook my head and turned away, but I thought, how hilarious. I look at my absolute worst in my entire life and this guy is making a pass at me. I wondered what his reaction would be if he got close enough to see the woman he's trying to flirt with is bald and eyebrowless and eyelashless.

I guess I've still got it. At least at a distance...

Friends Visit

Old friends, Wanda and Vicki, are here to visit for the weekend. It's unlikely I'll do any blogging this weekend.

I haven't heard from the surgeon yet and don't know when the surgery will be. I hope I'll have at least a week. My sister Cheryl and her daughter Lisa are coming this way to see her other daughter, April, and the new baby. I'd like to be able to visit with them too.

The good thing that happened yesterday: I got a really sweet note from my niece, Cait, and a picture of her beautiful family. Hope to see that adorable baby girl in person soon.

And the Answer is...

They did a mammogram and then an ultrasound, just like before. After the ultrasound was done the radiologist came in the room and said, in an accent I couldn't quite identify (German maybe?), "Well it has shrunk considerably since the last time you were here! It's more than two-thirds smaller."

"Can he see it well enough to do a lumpectomy?"

"Oh yes, Dr. Marler will have no trouble, using either mammogram or ultrasound."

I think she said it was 11.1mm. I was surprised she told me anything, but I had told both technicians I was hoping to find out there was enough left of the lump to do a lumpectomy. It was actually bigger than I expected, but maybe that'll mean "clear margins" and there won't be the question of whether he gets all of it. That was the main argument by the onc on why I should have a mastectomy.

Now I wait for the surgeon's office to call to find out if he agrees with the radiologist and when the surgery will happen.

I've been looking in the mirror when I get out of the shower and I laugh every time at the fuzz/hair sticking up on my head. I finally realized why it looks so funny. Have you ever seen a baby orangutang?

Mammogram Day

Boob squishing today. I'm hoping to get the tech to tell me if she sees anything on the mammogram, but I know she won't. They never tell you anything. I'll just have to wait to get the call from the surgeon's office after they get the report.

I'm feeling a lot more like myself these last few days. I'm starting to talk like myself, walk like myself (well, not really with the balloon feet and all), and look like... hmm, actually I look pretty funny with the fuzz/hair sticking straight up on my head. It's getting longer, but not long enough to lay down yet. And it's pretty thin and wispy, but more is growing everyday. It's soft like baby hair.

Oops! Look at the time! Gotta go.

Surgeon Update

Luke and I took a weekend getaway to Dallas. We stayed at a nice hotel where the staff treats you like royalty. And I think I had the most expensive meal of my life. The kind where presentation is as important as the food.

Monday we saw the surgeon. He said he'd do a lumpectomy if he could see it on the mammogram. I have that scheduled for Thursday so, as weird as it seems, say a prayer or cross your fingers that they find something on the mammogram. Otherwise, I'll have to have a mastectomy of the right breast.

If I have the lumpectomy I'll have radiation which means a new doctor, a radiation oncologist. I'll go every day for six weeks. But a mastectomy and reconstruction takes months. I truly want to be done with all this by the end of the year. Of course, technically I won't be done for years, but I mean all the treatment.

My left foot swelled yesterday and this morning it's still a little plump. At this point I'm not really sure which doctor to call now that the oncologist has cut me loose. I think I'll call the nephrologist.

Time for breakfast and work now.

Return of the "Paper Gown Princess".

Dallas Dawn - my favorite work of art!

Dawn "mixes it up" with Hunter (6/25/07).

Long Story Short

I know I said I'd finish the story, but I just don't feel like it. So instead of telling the whole story, I'll cut to the chase. At the onc visit we decided the benefits of the chemo weren't worth the side effects. We decided to stop the chemo treatments now and not do the final two. Trust me on this one, there's no way this onc would suggest we stop here if he didn't really think my reaction to the chemo was extreme. I'm so relieved he suggested it (and I didn't have to), because I was beginning to feel like there was no way I was getting out of this short of being crippled. But I think the neurontin is helping. I still can't stay on my feet for long, but it does seem to be improving a little every day.

I go to the surgeon on Monday to decide what we do from here. By this I mean how extensive the surgery will be.

Oh yea, btw, the onc sent me to ultrasound to be sure I didn't have a blood clot (I don't) causing the pain around the port. Still don't know why I'm having pain around the port.

And have I mentioned that I have white fuzz growing all over my head? It feels kind of cool. And I can feel the wind blow through the fuzz on my neck. On the other hand, I also have it growing along my jawline, like I'm some kind of simian creature. My friends insist you can't notice it unless the light hits it just right. And other post-chemo patients have assured me that it does go away.

The good thing that happened today: My niece, April, had her second baby. This one's a girl. And if that wasn't good enough, April happens to be my godchild. And if that wasn't good enough, she had the baby here in Natchtitoches, (because she doesn't live too terribly far away) so I'm able to see her and visit her and the baby.

Taxotere -number six

I went in for the taxotere treatment not knowing what to expect this time. But I was determined (as I am with every treatment) that I would be the one to have no side effects and to take the chemo with a smile, ever strong and unflappable. Okay, so my record hasn’t been perfect, but it was a new day and a new chemo and I had caused enough trouble already.

The onc apologized again for our miscommunication problem. My blood levels were better than they have been, but not good enough to stop the aranasp shots. Then he did the breast exam and, as I have already mentioned, he found no lumps. Except the ones that were supposed to be there, hehe.

The treatment itself was pretty easy. They gave me benedryl in the drip first thing and I was so cool I fell asleep immediately. They started the taxotere while I slept and I woke up with only about ten minutes left to go. Instead of the dignified and witty image I sought to portray, I was groggy and confused. I thought they had just started the taxotere, but really it was all over.

The rest of the day, except for the sleepiness, I felt fine. No queasiness or anything. But on the third day...

It was the same as with the taxol: My feet, which had started to feel better with the neurontin, where numb again. And I had sharp pains everywhere. The pain didn't seem as bad as before, though. I’m not sure if that’s because it really wasn’t as bad, or because I wasn’t taken by surprise like the last time or because I already had the hydrocodone ready.

After a few days though, I was once again sick and tired of being in zombie-land on the hydrocodone. I kept trying to make it without it, but by evening I had to take the painkillers. Then I started having pain around the port and down my left arm and around my left collarbone.

I called the cancer center to ask if all this was normal stuff and make sure I was taking the neurontin correctly since he increased my dosage. The nurse focused right in on the pain around the port and said I had to come in.

Didn’t mean for this to be a cliffhanger, but suddenly I’m tired. And that doc visit changed everything, so it’s a story unto itself. I’ll try to finish the story tomorrow after work. Tune in next time for the continuing saga.

Visitors

The good thing that happened:

The weekend before the taxotere treatment was scheduled my brother, Larry, his wife, Marie and my sister, Sharon came to visit. They picked a great weekend to come since I had had two weeks to recover from the taxol. On Saturday my niece, April, joined us and brought her 20 month old, Hunter. He is such a delightful baby and I had the best time playing with him all day.

We did some Natchitoches things: the Green Market, the Mercantile, a plantation tour. Larry brought some trout and his burner and fried fish for us Saturday evening. It was a good visit and really lifted my spirits.

We also discovered a new campground suitable for Larry and Marie to park their camper. The campground has a lake and cabins and a beach. We're hoping to rent a couple cabins and have a whole family gathering when the weather cools a bit.

What I Should Be Doing With My Time

I’ve wondered, and I bet most of you have too, from time to time, what I would do if I found out I had a fatal disease. I’ve daydreamed about what I would do if I learned I only had, say, six months to live. Come on, you know you have too! You can’t help it. We’re besieged with popular wisdom: live today as if it were your last, carpe diem and all that jazz. Get out there and experience life!

Awhile back I promised to tell you about some of the emotional crap that comes along with dealing with cancer and that’s what I’m getting at here. It seems I’ve moved from shock to acceptance to anger to shame and disappointment in myself for not doing those things I’ve always thought I would if faced with the knowledge that death may be coming sooner than expected. Frustration is another good word for what I feel. I’ve always thought I really would seize the day and do crazy things and leave letters behind or video recordings with important messages about life and death and love and hope.

The problem with this romantic notion is, of course, that doing most things takes time, money and energy. All three of which are in short supply when you find yourself facing down a life-threatening illness. Most of your time, money and energy are spent trying to ensure that the illness doesn’t ultimately turn out to be fatal.

Then it becomes an emotional dilemma. You know you should be out there ‘seizing the day,’ but really all you want to do is curl up in your chair with a big fluffy blanket and stare zombie-like at the TV while your loved ones bring you ice cream bars and glasses of water. This leads to guilt: I’m going to die and my last days are going to be my most boring. And all my loved ones are going to wonder why I didn’t write them meaningful and humorous letters about how they made my life wonderful. After all, I had plenty of time sitting around recuperating from treatments.

The truth is I really want to write those letters. And I really want to drag my weary body outside to smell the roses. But when I think about it, I think, it’s a million degrees outside, I’ve smelled roses and I don’t think their smell has changed, and I can’t take the smell with me, so what’s the point?

As for the letters, well once you start you have two problems. First, you have to admit to yourself that you might actually die, which is so ridiculous, because in all your life experience it’s been other people who die, not you. Okay I recognize this is in no way logical, but nonetheless… Then of course, if you get beyond that and really admit you could die, then you are so overcome with sadness for the people who count on you that you just can’t bear to do anything. Except you cry and cry and cry until you are totally drained and even more exhausted and can’t feel anything. Who can write meaningful and humorous letters when they can’t feel anything? So you eat an ice cream bar and pull your blanket around you more snuggly and pick up the remote.

The other problem is that once you start writing letters you discover that you can’t possibly write a letter to EVERYONE and what if you leave someone really important out and they forever wonder why you didn’t care enough about them to write them a letter, but you wrote a letter to so-and-so who you barely knew.

Before this all began, in my daydreams about what I’d do if ever I found myself in this particular situation (in addition to seizing the day and writing letters to loved ones) I’ve often wondered to whom I would write the letter that starts, “you probably don’t remember but….” Who would I get in touch with to let them know they made a difference to me in some small way they may not even be aware of? You know that friend who tricked you into reading your first novel (I double dare you to read just one chapter) and turned you into a reader (where are you now Carrie Comeaux?) or the teacher who really reached you. Because there are some people, including one or two teachers, who did a small thing for me that actually changed the course of my life for the better. Shouldn’t they know? I mean wouldn’t you get a charge out of finding out something you did, but have long since forgotten, had a positive influence on someone’s life? I know what you’re thinking. Why not just tell them? Why would you need to be dying to write a letter like that? And to that I say to you, heck I don’t know. Embarrassed to bring it up after all these years?

And so here we are, four and half months after diagnosis, and I still haven’t written a single letter. I still haven’t gone out and done some crazy thing I’ve always wanted to do but never got around to. The hard truth about cancer is that you may know that death is possible and you should prepare just in case. And you may know what you’d like to say to whom, but the drugs you take to dull the pain also dull the mind. On your bad days you’re weak and exhausted in which case you stay home, zombie-like in your chair. On your good days you work because, if you live through this, you can’t afford to lose your job. However, when the workday is done you have nothing left to give to writing letters or anything else. And then there’s this thing no one warned me about called “chemo brain” that makes it hard to form a cohesive thought sometimes. That’s why, to my surprise, I’ve had a hard time keeping up with the blog.

Now you know. But what I’ve described above isn’t something I think about or worry about every day. That’s how emotion is, one day you are up and another you are down. I’m not having too much trouble writing today after all.

The good news is I no longer feel like I’m going to die. My prognosis at the beginning was somewhere between 16% and 49% survival. I give this range because my diagnosis was Stage IIIC which none of the charts show because apparently it wasn’t a separate stage until 2003. Before that the stages went from IIIB to IV. Therefore the charts show survival rates for IIIB as 49% and for IV as 16%. I thought I’d seen a chart somewhere in the beginning that showed 36% survival for IIIC, but I can’t seem to find it now. At any rate, these are not good numbers. However, my cancer has shrunk rapidly and at my last treatment (which I’ll tell you about later) the onc could no longer feel any lumps at all. I’ll repeat that, much to the visible delight of my onc, he couldn’t feel ANY lumps at all.

Fun Flies When You're Doing Time!

I can’t believe how much time has passed. A big whole bunch has happened since June 19, I’m not sure I can remember it all. I’ll try to sum it up without being too boring.

Here's the first story:

When I last scribbled here I still had a doc appointment ahead of me. Let me tell you, that one ticked me off! I saw the nurse practitioner and told her the problems I had with the taxol, the pain and numbness in my feet, and my fear of permanent nerve damage. I asked for alternatives. She discussed it with the doc who came in and asked me if I was sure I was having numbness in my feet or if maybe I thought it might be my IMAGINATION? You know, because he suggested it could happen. He also said it didn’t happen that fast, it should take a couple of treatments and I should have tingling in my hands. I was dumbstruck! What is with these doctors always thinking we imagine symptoms! I bet this damn cancer wouldn’t have made it to Stage IIIC before we found it if the docs had listened when I complained of pain in my breast and chest! They say cancer doesn’t hurt, but I think that’s BS. I think it’s been here awhile and I’ve felt it growing and the docs blew off my symptoms. This might sound crazy to you, but I've talked to other women who've been through this and I'm not the only one who had pain in places that the cancer later appeared.

Anyway, I digress. The onc says, we can change chemos, but they all have side effects. I told him I was concerned about the permanent side effects, not the temporary ones. He agreed to switch from Taxol to Taxotere. Common side effects: disgusting nails (meaning they may turn black and fall off) but will grow back to normal after treatment stops. And water weight gain. But the neuropathy is much less likely with Taxotere. After he left the room I broke down a little and told Luke I didn’t want to gain any more weight and when was this nightmare going to end. Luke assured me the onc said water-weight and I would be able to lose that after the chemo was done. I had collected myself by the time the NP came back in. Luke told her the onc didn’t believe me, but she said, “I believe you. And the important thing is he agreed to change the chemo.”

The next day after stewing over his response I called the NP and asked her if it would be difficult to change to another doctor. She didn’t think so, but asked why. I explained to her that my onc didn’t believe me when I told him what was happening with my body and I lost confidence in him. She said she’d call one of the other docs and did I have a preference? I didn’t know either and all things being equal, I’ll pick the woman. She said she’d call me back and let me know if the other doc could fit me in on the same day I was already scheduled.

A few minutes later the phone rang, the NP said, Dr. #1 wants to talk to you, is that okay? Oh sh**!! What can I say? No, I’m too much of a baby to talk to him? Of course I felt cornered, but I calmly said, “Sure.” He gets on the line and says, “Mrs. Brouillette, I absolutely did believe you, that’s why I agreed to change the chemo. I never would have agreed if I didn’t believe you. I’m sorry if I sounded doubtful, but I was so surprised because in my experience the neuropathy has never hit so quickly. Your comment about walking on a bar certainly convinced me that you weren’t imagining it. It’s just that you are totally off the bell curve! Again, I’m sorry I came across as if I didn’t believe you.” Then he said he’d understand if I still wanted to change doctors and he’d put the NP back on the line. Geez!! Now he decides to be human? After I mustered up enough anger to make the call to the NP in the first place? ! What did I do? I said it was probably best to stick with him since we were so far into treatment already. And that’s how that went. I had a week to recuperate and then – taxotere.