A Little Seriousness

Oh my, totally forgot the blog. Update: oh yes, the dang drainage thang is infected. I've been taking antibiotics for it for a few days and it looks much better. Unfortunately the drain isn't coming out until next week due to the infection.

While at the surgeon’s office I asked him what we should do about the positive margins indicated by the pathology report. He said he wanted to look at the slides himself before advising us on what to do. Our choices are what you’d expect; another lumpectomy, a mastectomy or possibly the radiation might take care of it. Then he said something he’s said before, but I didn’t put on the blog.

He said, “You understand that we aren’t going for a cure? That as advanced as your cancer was … it has already left the breast and eliminating it in the breast (or removing the breast) won’t stop it.” I didn’t put this on the blog before because I just couldn’t type the words. His point in telling me this was to explain that a mastectomy would not rid me of the cancer as cancer cells have already left the breast. It would be locking the barn after the horse has been stolen. In my case a lumpectomy should be as effective as a mastectomy and the less trauma the better, because, “we can’t cure it. It’s already out.”

Because of this conversation I felt very down a few days ago and did some more web surfing and research on breast cancer, particularly Stage IIIC. I even called the American Cancer Society information line. He couldn’t really tell me any more than I already know (he was reading from a fact sheet, I think), except one thing he told me which I think is important. The stats they have on survival percentages are based (first) on all women with the disease, whatever treatment they had (or didn’t have) and (second) on data collected up to ten years ago. Anyway, I had a little break down and wallowed in self-pity for a while. I find it helps to do this now and again, when no one is around. Let it all out in a big cathartic emotional tantrum and then get on with life.

I want to believe the chemo took care of any cancer cells that made it out of the breast. In fact, it stays in your system and continues for work for a while even as you are recovering. I still get sharp pains (like pinches) in my breast that I started getting after the chemo treatments began. These pains, I believe, are cancer cells dying. I may yet have more chemo because the oncologist wants to do another CT scan before deciding for sure not to do the final two treatments. The radiation I have will be directed not only at my breast, but also at my neck (where I had a positive node).

I haven’t yet asked for a prognosis and I probably won’t until I’m well into the radiation treatment. As my sister-in-law, Marie, told me, “Don’t borrow trouble.” I feel like it’s going away and that's all that matters.

At Home with Healing Thoughts

The days are moving along. My arm still hurts but not as urgently. I can go much longer through the day without resorting to pain meds. In fact I feel like I probably won't need any today.

On Sunday I discovered that a sport bra that latches in front and is two sizes too big is just the ticket. I can have a little support and the elastic doesn't squeeze the drainage tube. This means I can leave the house, without shame. I was beginning to get a little of the housebound crazies, if you know what I mean. Since coming home from the hospital I've only left the house twice(other than to pace around the yard for the few minutes I could stand the blazing heat). Once to go visit at my mother-in-law's house and once to have dinner at my sister-in-law's house.

Since getting the bigger bra idea I've been to Walmart, the doc's office (local PCP) and the post office. Today I'm going to venture to the bank. Life is good again.

Or so I thought. The area around the drainage tube has started to swell and turn red. The wire stitches that were on the outside are now inside. My breast is tender to the touch, in an OUCH sort of way. I fear I may have made an error with the bra.

I've tried calling the surgeon's office, but they're all at lunch until 1:30. Hurry up and wait. I sure hope I don't have to go to his office (in Shreveport). Maybe I can have my primary care doc look at it instead. She's just around the corner. Funny thing is that yesterday when I saw her for the fluid retention (did I mention the extra 10 lbs I'm carrying around from fluid retention?) the dang thing was fine. I even had her look at it to be sure. Twenty-four hours later I'm getting worried about infection.

Ooops, spoke too soon. Just talked to Sherry, have to go to Shreveport tomorrow to let the surgeon see my swelling. Oh well, at least I'll get out of the house, right?

The good thing that happened: I received, in the mail, something for my Cancer Days (see how people care) Box. Was it a card? Well, yes I got one of those too, but this is something else. A letter? No. An autographed picture? No. Give up? Of course you do because this is something no one would imagine sending. My oldest (and dearest, he'll insist I add) friend in the whole world, Clint, actually sent me a braid of his hair. A big braid too, not just a few strands! Isn't that hilarious? And so thoughtful! After all what do I need, but hair?

For those of you going, huh? I'll explain. Clint had long and thick hair which he regularly grows and then cuts off and donates to Locks of Love. He did this long before I got cancer. This time, however, his hair was so long and thick they braided it in four braids to cut for donation. Only he saved one, which arrived in my mailbox yesterday. Thank you, Clint, and I'm relieved it isn't dead fish!

OMMMmmmm

pre-surgery OOMMMMmmmm...

A Week and A Day

It's Saturday now. I'm thinking more clearly. And since I'm thinking clearly I'd thought I'd take this opportunity to whine a little. I know, I know, so unlike me.

The drain site is raw and it hurts! But Luke puts Neosporin with pain relief around the opening and it helps. Wanna hear about the drain? Come on, you know you do! The drain is tubing, like IV tubing, that sticks out of a hole in the side of my breast under my arm. At the other end of the tubing is a bulb sort of like what's used to pump up a blood pressure cuff - only clear. It has a plug on it that you open to empty the fluid. Then you squeeze the bulb and plug it again creating a vacuum that pulls the fluid out (of my breast). The tubing is anchored in my breast by wire stitches. When I move my arm around the skin around my breast is pulled. Look in the mirror and move your arm around and you'll see what I mean. Can't see it? Are you naked from the waist up? Take off your shirt and bra, ninny, and you'll get it. Anyway, this movement pulls the tubing in and out (of me) and the stitches rub and that's what causes the rawness. Also, sometimes it leaks and gets the skin wet, which adds to the soreness. Disgusted yet?

My right breast appears to be a little smaller than the left, but not a bunch. Actually it always has been, but now it seems more obvious. I doubt it will be noticeable at all with a bra on, though. And speaking of that, I can't say I ever thought I'd miss wearing a bra (especially since I'm one of those women that sheds hers the minute she walks in the door of her house after work), but, because I can't wear one (the drain comes out at the exact spot the elastic from a bra should be) I really miss it!

Then there’s my arm trouble. The underside of my right arm alternates between sharp pain and sore numbness. The stand-in surgeon who released me from the hospital said this surgery can damage the nerves there and the numbness can be permanent, but I'm thinking the sharp pains are signals that the nerves are waking up. We didn't get any instructions on how much or little I should use that arm except one nurse said I would probably be happier if I used it as much as possible. Luckily, I can use it a lot more than I expected and don't have to do EVERYTHING with my left arm.

Yesterday was our 10th wedding anniversary. Luke’s and mine! That makes today the beginning of decade number two. Nice of me to do the math for ya and state the obvious, eh?

I heard a great line on a TV program the other day. "My father always used to say, it'll all be okay in the end. So if it's not okay, it's not the end!" There you go, it's not the end.

Post-surgery Days

Crawling from the chair I've been poured into since I came home....

First day back, good day. Actually did some laundry and cleaned the kitchen. Then bad days. Just a haze. One day spent on the phone. That was good, except I had pain and took pain meds and felt like crap and slept and couldn't eat and still felt like crap. I managed to lay in the bed on my side for a few hours last night. The drain in my side is right in the way and I'm afraid of pulling it accidentally. I know I'm not making much sense, but it's how I feel. They told me (the sources I have who have been here before) that this part was the easy part. They lied. Or maybe they meant radiation. That's Phase III. We're still in Phase II - surgery. Phase I was chemo.

I do remember this. Yesterday the surgeon called with the pathology report. It wasn't good. Three out of twenty-three nodes were positive. To quote the surgeon, "That's very good considering the size of the thing." Yes, but what of the margins? Positive. That's bad. It means he didn't get it all. He said he may have to go in again. Or, I don't know. He said he had to look at the slides himself and we'd talk about it when I went back in to see him, when the current incision stops draining so much. From the looks of things, that could take a while.

There's a volcano on Maui that people drive up early in the morning before the sun rises. Then everyone rides down at dawn on yellow bicycles. It's a beautiful thing to see and someday, I will do it myself.

Cancer Days Box

On my last post I asked people to send me a letter or a card, if they are so inclined, to add to my "Cancer Days" box. Then someone asked on a comment what a "Cancer Days" Box was. I guess it was a little confusing. I'm talking about a Keepsake box, a box of memories, like you keep letters in a shoe box or whatever. For example, I have a "baby box" with stuff relating to Jeremy's birth. Since I found out about the cancer some people have sent me get well cards or little gifts. (I have a post card from my sister that she sent from Egypt.) At first I didn't think I'd want to save the cards, because I thought I wouldn't want to be reminded of this year of cancer. But actually, the cards remind me that I have friends, old and new, which is something I do want to remember. I hope that clears things up.

So, as I said, if you are so inclined, please send me a card, funny or serious, or a letter or a note or a blank sheet of paper with your signature on it, or anything that will remind me of you that I can put in my box of "good" memories from my "bad" "Cancer Days."

If you need my address than email me directly. You can get my email address by clicking on my name at the top of the page under "contributors."

That's about all I can write tonight. Tomorrow I'll tell you about the surgery. Today I'll just say it all went well and I'm feeling better than I expected to.

Surgery Day

No time left to blog. Thought I'd have time to remember what I had put down and lost, but people and work keep you busy. I mostly didn't get a chance to call anyone either.

Oh well, off to the hospital. I may not be able to type for a while.

Wish me luck!

DAMN

I just spent 45 minutes making a post and the damn thing is gone! I've lost it. Now I have to go to work and can't even try to recover it. Sometimes I hate modern technology. I just don't know what happen.

Oh well, maybe I'll remember some of what I had to say when I get home from work, tired and brain dead. Hmmm, not likely. Well, I'll try again later anyway. Should have saved it as I went along.

Oh if you're so inclined, send me cards and letters for my "Cancer Days" box.

Countdown to Phase Two

I'm calling the lumpectomy and everything involved with it "Phase Two." Chemo was Phase One and the radiation treatment will be Phase Three.

I thought it would be a calm week leading up to the surgery. A time to contemplate my life and be introspective while waiting for the beginning of Phase Two. Yea, right! Would you believe I've had to go to the doctor or run to Shreveport everyday this week? Will it never end? (I think this is becoming my mantra.)

I'm going to the doctor, my PCP, in town because my legs are swelling and I'm retaining water. I'm taking something for it and I'm hoping it goes away by today or she's going to call the surgeon and tell on me.

And I've been working trying to get things in order for the poor souls that may have to handle some things while I'm out. I'll be out of work at least two weeks.
I planned to call a few people this week but have been exhausted by the time I get home. Maybe today.

I guess Phase Two has actually begun because I've seen the surgeon, had a mammogram and set the date. Yesterday I went to Shreveport for pretests. I think I passed. They took urine to do a pregnancy test (they never believe you know you're not preggers). They took blood, did an EKG and a chest X-ray. It took forever to give the nurse the info about medicines and health history (that one's getting ridiculous). The poor woman kept saying, "Oh no! You poor thing!"

Then she said, "Your parents must be frantic." I had to tell her they were both deceased. And she said, "Dawn, no! When did that happen?"

"I was 16 when my mom passed (kidneys) and 24 when my dad went (heart)."

"No, no, no!" Then she asked if I had any siblings. At this point I started laughing and told her about my family and Chrissy. I had to explain to her that I wasn't heartless and I grieve for everyone but it just seemed so ridiculous that each question she asked led to another tragic answer.

Then she asked if my hair was growing back and could she see it. So I took off my hat and showed her my baby orangutang look. She said, "Awww." She was sweet and laughed at my stupid jokes. The whole time she was asking questions she was typing. She even asked how my husband was handling all this and if he was alright. I don't know why the computer needed this info, but she put it all in there.

The good thing that happened: I bought new shoes!

Places I want to go: Devil's Island, Lake Superior at Apostle Islands National Lakeshore, Wisconsin

Dawn and Wanda compare feet at a recent visit from Wanda and Vicki.

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.

Numbness

Let me tell you what a fun week I had. Everyday at work our systems have been up and down all day so very little actual work was completed. Very frustrating since it was the one week I had no appointments and could be there all week. Friday being a deadline date for the month added more frustration.

I had to take a pain pill by the end of each day through Wednesday. Wasn’t bad enough to need one Thursday or Friday. I’m even better today. No real pain, just achy ankles. Or maybe I’ve just become accustomed to the pain. Still some numbness in my feet, but in the immortal words of the Beatles, “It’s getting better all the time.” There’s a strip of numbness down the middle of my left foot from toe to heal. And there’s a patch of numbness remaining on my right foot. I’m sure the aching in my ankles is due to walking incorrectly. For example, I’m rolling my left foot to the outside because it feels as if I’m walking on a bar or something. And I’m walking on the ball of my right foot because the numbness is toward the back. I have to consciously make myself walk normally and not do that, but it feels mighty weird walking on numbness.

I’ve taken the neurontin for six days and it appears to be helping which is a relief. I’m truly afraid of how much of this numbness will be permanent. The doc’s warning about the taxol was that it could cause permanent nerve damage. He said it would start as tingling in the tips of the fingers or toes. Boy, was he wrong! It hit me full force within a week of having the chemo. And not just my feet. More disturbing then the numbness in my feet, for a few days I had trouble urinating. I had to really concentrate to relax that muscle and let it out. A slow trickle came out and that was all I could manage. I couldn’t quite empty my bladder and had to make frequent trips to the bathroom. I started to fear getting a bladder infection. Fortunately, that went away and I’m urinating normally again.

And here’s a really bizarre thing. Way back when, 17 years ago, when I was delivering Jeremy I had an epidural. Afterward for about two years I had a numb spot on my left thigh. It was about the size of a silver dollar. Well, it’s baaaack! And it’s a bigger area now, about the size of a saucer. Weird, eh?

Tomorrow I have an appointment with the oncologist. It's time to talk about options or alternatives. I'm really terrified to take anymore of that taxol. It may be time to stop the chemo. Though it's a tough decision to make when the pressure from all around is to do whatever it takes to live longer. But what is the point if you aren't even yourself, because you are hurting or too weak and tired to do the things you enjoy? Or crippled because you have permanent nerve damage in your feet?

But that's tomorrow's worry. Today I'm painting a bedroom wall and then I don't know what else.

The good thing that happened: Luke sent me flowers on Friday. And we went to see Batman Begins. It was pretty good.

Support

I joined an online support group. Their experiences are so diverse even though most of them seem to be getting the same core treatment - adriamycin, cytoxan, taxol. I actually feel a little better about my doctor after hearing some of the things they've gone through. I'm especially confident about all the testing that was done initially. Reading about their situations makes it so totally clear to me that this is a hit or miss situation. The doctors really are "practicing" medicine and they don't really have a handle on this disease. That's scary. We want to have confidence in science and modern medicine, but it's clear that we're far from a good cure for cancer. We just hope the poison kills it and not us and that's basically what it comes down to. And maybe, if we're good, and hope real hard, we'll get out of this without TOO many scars, physical or psychological.

Pain Killers

I've been in a haze of painkillers since Friday. Big plans to write all about what I'm thinking about while I go through this poisonous journey. No use. Can't think when you're falling asleep from the hydrocodone. I tried to go to work yesterday and not take the pill, but after a couple hours I couldn't stand it anymore and took one. I'm also having numbness in my feet. Numbness sounds like something painless, but it's not. It's like when you sit on your feet too long. Not pins and needles, but swollen balloon pain. I'm walking like an old person with athritis in her feet. Like I'm trying not to step on my feet.

I called the doc (as instructed, "Don't wait until you've had numbness for two weeks, let me know early so maybe I can do something!"). His nurse, Mary, cold as ever, said, "Oh, nothing we can do so just tell him when you see him." A week from now. NO! I had to insist that she tell him and that he instructed me to tell him immediately. Reluctantly she agreed to pass the message on to him. Anyway, now I have another pill to take. Neurontin. I took it last night, after checking with my nephrologist (warning: tell your doctor if you have kidney disease) and getting an okay. I do feel better this morning. Not so much pain. It just feels like aches from too much exercise. And my feet, which I could hardly walk on, feel more like feet, though still some tingling numbness.

I'm going to try again today to work and not take the hydrocodone. I'm just taking some acetemetaphen.

This taxol is a totally different experience from the other chemo. No dizziness or queasiness. No aversion to different foods. No bad taste in my mouth. No flu-like symptoms. Just pain like I've been beaten in my sleep.

The day is just beginning so I don't have a good thing that happened today, unless you count a noticeable lessening of pain in my legs.

Pain

Oh hell, the pain!! I can't believe it! It seemed like taxol was going to be easier going than the other chemo, but Thursday evening my legs started to hurt intensely. My leg bones and my joints, my knees, my hips, my ankles! I had aching bones with the shots before, but this is so much deeper. Thursday night I took some hydrocodone that I had left from when I had the migraine. It helped. Made me sleep.

I'd hoped it would ease by Friday morning, but it didn't. There's no comfort. Legs stretched out, folded in, leaning left or right. Heating pad, hot bath. Doesn't matter. A moment of relief and then stabbing pain from two or three places at once. Talked to Kate (the nurse prac)who said, yes, taxol can cause this kind of pain in some people. Should only last a couple of days and I could expect it after each treatment. She called in more lortabs. It helps, but it doesn't do what I want. I want to be totally body numb. It doesn't do that. I was hoping I'd wake up today and it would be over. I don't want to be fuzzy headed all day again. But the pain has not gone away. It has, in fact, spread to my upper body, shoulders, arms. I think my ribs hurt. I broke down and decided I'd have to have another day of pain killers. Wasted day.

Chemo 5 - over the hump

Down hill from here! At least as far as chemo goes. There's still the issue of surgery and possibly radiation, but that's for another day's worries.

I had my fifth treatment yesterday. The first of the four taxol. They said I won't grow my hair back just yet, though I do have some white fuzz sticking up on my head. I hope if it comes back white/gray it'll still be soft and not coarse like some gray hair can be. Or maybe it'll be a soft beautiful blond! Cool.

The side affects are much the same as the other; nausea, fatigue, hairloss. Of course the only hair I have left to lose is on my arms and I still have to shave my legs about every three or four weeks. I haven't had to shave my armpits in months though! That's been really neat. And my girlie parts are bald and smooth as a newborn baby. Funny problem that causes, ladies. If you've ever shaved down there you probably are familiar with the peepee problem. It seems your hair works as a trail for your pee to neatly follow down into the potty. Remove the hair and the pee goes everywhere! How's that for an unanticipated problem? You have to sit at just the right angle on the toidee to pee straight down. Otherwise, what a mess!

They told me the taxol usually doesn't cause as much nausea or fatigue. It also isn't so hard on the kidneys as the other two, (boy is that a relief!!) but may be some trouble for the liver. I can't help think how crazy a treatment is that calls for you to intentionally poison yourself! And yet, we all agree to it.

The big thing to look out for with taxol is nerve damage in the hands and feet. Melissa Etheridge stopped her treatment with this because she was having trouble with her fingers and, of course, she needs her hands for guitar playing. I don't play guitar, but I do need to be able to type. We'll see what happens.

The doc was very pleased with the rapidly disappearing breast tumor. I mean, he was clearly delighted. I asked him if it was normal for a tumor to shrink so fast. He laughed and said, with cancer nothing is normal or predictable. But then he admitted it had gone from a large tumor (about as long as a AA battery) to something the size of the very tip of a finger in a remarkably short time. Not to mention the one in my neck practically disappeared after the first treatment. Then he told us a story of one other patient he had that was Stage IV (Stage IV is almost certain to kill you, I think the survival rate is like 15%) whose cancer disappeared altogether following the same treatment I'm having. I got the impression he was saying she was the only other patient he had who had done that.

Disclaimer: I have mentioned the communications problem I have with this doctor, so I could have misread what he was telling me. But I gotta say, the man was giddy.

I didn't mention to him that I had lost track of the number of people who promised to pray for me and put me on their church prayer lists. I'm not a religious person but all that positive energy may just be doing the trick. Thanks folks. And despite my recent whining, I've really not had a terribly hard time of it when I put it in perspective. I've heard of other people who were much sicker and more miserable than I've been so far. I can go to work more days than not. I haven't had any vomiting. The meds have affectively controlled the nausea. The worst has been the total interruption of my life and the fatigue. But I've got a great support system and people who care about me. And I don't think I'm going to die this year anymore. (See how much better my attitude is when I'm not suffering from PMS?) Let's not talk about the blood transfusion or having to put off a treatment due to liver function levels or the creatinine rising or the other problems with various parts of my body....

The doc also changed his attitude a little about the mastectomy. Not his mind, just his attitude. What he said was, "when you're done with these four treatments you'll meet with Dr. Marler (the surgeon) and you and he will decide where to go from there." I don't know if he put it that way because Luke was in the room or what. Being naturally suspicious, my first thought was, he's already discussed it with Marler that's why he seems so willing to go along with whatever "we" decide. Stop it, Dawn!

So I had the new chemo yesterday. The whole thing takes about 4 hours (after you see the doc.) We arrived about 9:20 for the doc appt and left for home about 2:30 after the chemo. First they give you premeds that take about an hour. Tagamet and bendryl and decadron (sp?). Then 3 hours for the taxol. The benadryl made me sleepy. I brought a book on CD (sometimes it's hard to read during the chemo) and fell asleep listening to it. Luke brought me lunch, but I couldn't eat much. I slept a couple hours off and on. Then we went home and I ate two bowls of cereal and slept some more. Didn't feel sick at all, though. I even managed to sleep last night after all that daytime sleeping. The only glitch was I woke up with acid reflux and had to sit up and take antacid and eat bread to get the acid out of my mouth.

Today I went to work (after going to the hospital emergency room for my neulasta shot - if you ever have to do this I've discovered the best time is about 7 in the morning) and felt almost normal all day. Even my appetite. Just a little heart burn.

After work I even took a dip in Bobbie's pool after watering the outside plants. Now I'm home and sleepy, but not sick.

The good thing that happened today: in spite of chemo yesterday, it felt like a normal day. I'm even sitting here blogging.

What I want to do someday: parasail.

Mastectomy

The thought of a mastectomy is very disturbing to me. I can't fathom having a part of my body removed. And I can't help being suspiscious of a medical community that has historically treated women with considerable less dignity than men. I've never heard of reports of doctors encouraging men to have parts of their bodies removed if not absolutely medically necessary, yet this sort of thing happens to women. We all know women who have had things like routine C-sections and hysterectomies for reasons that don't make much sense. Is it any wonder that I buck at the suggestion of a mastectomy by a doctor who seems to have made up his mind, but is reluctant to discuss it with me? Of course, I know it is up to me whether we follow that course or not, but how do I make an informed decision when I don't trust the doctor? Perhaps something will change before the end of chemo and this line of thought will be moot, but until then I'm trying to hash it out and prepare myself for the worst.

The surprising thing to me in all this is many women's reaction when I tell them I don't want a mastectomy. They can't understand why this would be a problem for me. They invariably say, "Don't you want to live?" Which brings up the question, just how far would you go to live? What price will you pay? Mutilation? Kidney failure and thus life on dialysis? Alive, but feeling sick all the time, so that your life sucks? Life is only worth living if you can enjoy it. Of course, losing a breast wouldn't make life unbearable, but it would alter your life in a way that you shouldn't take lightly. The doc doesn't seem to think it's reasonable to want to know if there are other options, because TO HIM it's the best option. Some of my women friends have said they would have a mastectomy even if the doc told them a lumpectomy would do the job. They say, no one will be able to tell. You'll wear a prosthesis or have reconstructive surgery. But the point for me is not whether other people can tell. The point is I will have to look at myself in the mirror every day and my body will no longer look or feel like me. Perhaps I am a more tactile person, but this will change my life for me.

I went online and found pictures of women who had mastectomies. Some had reconstructions (there are different types) and others did not. The pictures were meant to reassure women facing this decision. My response to them was total emotional horror. They were terribly scarred. The reconstructions looked worse than the ones without. The women talked about how they had no feeling in their new breasts, which were just dead (tactilely) nipple-less lumps of flesh that didn't even come close to matching the other breast. How can someone not understand how disturbing this is for me?

Someone told me that someone told them that when they had their mastectomy the flesh inside the breast was removed, but the outer layer of skin and nipple were left intact so that she had implants (like a normal breast enlargement procedure) and looked fine. Of course, this is hearsay. If this is what can be done, it wouldn't be so bad, except you still would lose feeling. The only problem is my pitiful research has not born it out and again I get no reassurance from the doctor. I know the surgeon (who will do whatever is to be done) will tell me what my options are when the time comes. And I know at this point it's fruitless to worry about. But how can I help it when my mind brings it back to me?

Mastectomy

The thought of a mastectomy is very disturbing to me. I can't fathom having a part of my body removed. And I can't help being suspicious of a medical community that has historically treated women with considerable less dignity than men. I've never heard of reports of doctors encouraging men to have parts of their bodies removed if not absolutely medically necessary, yet this sort of thing has been documented to happen to women time and again. We all know woman who have had things like routine C-sections and hysterectomies for reasons that don't seem to make sense. Is it any wonder that I buck at the suggestion of a mastectomy by a doctor who seems to have made up his mind but is reluctant to discuss it with me? Of course, I know it's up to me whether we follow that course or not, but how do I make an informed decision when I don't trust the doctor? Perhaps something will change before the end of chemo and this line of thought will be moot, but until then I'm trying to hash it out and prepare myself for the worst.

The surprising thing to me in all this is many women's reaction when I tell them I don't want a mastectomy. They can't understand why this would be a problem for me. They would not hesitate to have it done. They invariably say, "Don't you want to live?" Which brings up the question, just how far would you go to live? What price will you pay? Mutilation? Kidney failure and thus life on dialysis? Or, in light of my recent liver problems, some other organ failure? Alive, but feeling sick all the time so that your life sucks? To me, life is only worth it if you can enjoy it. Of course, losing a breast wouldn't make life unbearable, but it would alter it in a way that you shouldn't take lightly. The doc doesn't seem to think it's reasonable to want to know if there are other options because TO HIM it's the best option. And maybe it is, but I can't say right now because I don't have all the facts. And no one is asking the doc to lop off a part of his body.

Some of my women friends have said they would have a mastectomy even if the doc told them a lumpectomy would do the job. This leads me to wonder if they hate their own bodies or is that the depth of their fear of death. They say, no one will be able to tell. You'll wear a prosthesis or have reconstructive surgery. But the point for me is not whether other people can tell. The point is I will have to look at myself in the mirror every day and my body will no longer look or (just as important, if not more) feel like me. Perhaps I'm a more tactile person.

I went online and found pictures of women who had had mastectomies. The pictures were meant to reassure women facing this decision, but the women in the pictures were terribly scarred. I reacted to the pictures with emotional horror. How could this be okay? Some of the pictures showed the various ways reconstructions are done while others showed mastectomies without reconstruction. The ones without were actually less disturbing than the ones with. They use flesh from other parts of a woman's body (such as the abdomen) for the reconstructed breast. In one picture, for example, not only was her chest full of scars, but she was scarred all over her abdomen as if she had been eviscerated. Also her belly button was off center. The result was a crisscross of scars and a nippleless chunk of flesh with no feeling that came no where near matching her other breast.

Someone told me that someone had told them that when they went through it the flesh of the breast was removed, but the outer skin and nipple where left intact. In this way she had an implant (like you would with a breast enlargement) and it looked fine. This wouldn't be so bad, but it is hearsay and I haven't found anything online like this. My doctor, of course, is loathe to discuss it. I know the surgeon will tell me my options when the time comes and it's pointless to worry about until then, but I can't help it if my mind goes back there. I haven't looked at or for any more pictures, though. That was a bad idea.

I think what the doc doesn't understand (and some of my women friends) is how I will feel after it's done. He says once you have the mastectomy you will be all done with it. But I won't. I'll have to live disfigured for the rest of my life. He will, however, be done with me, so I guess that's a good thing.

Again this whole thought process may be pointless, because as the doc is fond of saying, it's too soon to discuss. Anything could happen. For example, I sure didn't expect the tumors to shrink so quickly. Now that I've gotten this out of my system I'll go back to being as optimistic as I can.

Sometimes I feel like life is just a series of tests. I wonder how I'm doing on this one?

Talk about Anger

About three weeks ago, for about a week, I was angry. Really angry. Overflowing with it. The anger came bubbling up out of me, like a pot of water left too long to boil. And like that pot of water, once it all boiled out I was left empty.

I didn’t realize the rage was growing inside me until I snapped at a coworker who reminded me of a policy change (yet another) that I had forgotten. I apologized immediately for taking my frustration over my memory difficulties out on her and she accepted my apologies. But the incident left me feeling out of control.

Why all the anger and frustration? Let me count the ways.

1. Apparently, chemo or stress or uncertainty (I can’t really say which because this is one of the questions the doctor has failed to answer for me) causes problems with memory. It’s a struggle to remember simple things or keep track of changes at work or family schedules at home. I’m not normally a list maker, but I’ve had to become one to organize my work. I feel like I’m loosing brainpower if not my mind (jury is still out on that).

2. I take pride in my work and now because of the time I’m forced to take off or due to utter exhaustion, I’m unable to do my job well. I can’t keep up. My work is behind and I can’t keep track of new policy memos. I’m angry with myself for not being able to overcome this situation and continue to do a good job.

3. This situation has taken over my life, my time, my freedom. I can’t get away from it. I am Cancer Woman day and night. From the dust that constantly gets in my eyes because my eyelashes are too few and short to protect them to the pain in my chest from the port being squeezed that wakes me in the middle of the night. Everything I do, I have to plan around cancer treatment.

4. Though I think it’s too late in the middle of treatment to change doctors, I’m getting more and more unhappy with the oncologist. He always seems to be rushed, running out of the room before I finish asking my questions. When I do get the questions out he tells me it is too soon to ask or I’m not paying attention. That means he thinks I’m arguing about treatment when all I want is an explanation. Please tell me why we are following this course of treatment and what is the next step. He seems to take these inquiries as questioning his decisions. He talks to me as if I couldn’t possibly understand. This, of course, is compounded by my loss of words, due in part to chemo. Sometimes it's even a struggle to get the words to come out of my mouth.

5. When I have a problem the doc tells me either, chemo doesn’t do that (and he sends me to another specialist or just shrugs) or acts annoyed that I didn’t tell him sooner, or gives me the impression that perhaps it’s my own fault? Or sometimes, he asks why I am telling him about something and not just calling my PCP. Of course then he fussed at me for telling my PCP something before mentioning it to him. It’s all very confusing and again, I can’t get straight answers out of anyone.

6. When this all began everyone at the Treatment Center was so nice and concerned and attentive. I thought as time went by that I would receive very thoughtful and comprehensive care. That has not turned out to be the case, at least not in the way I imagined. Oh, I think I’m getting the right course of treatment, with the chemo and the blood tests monitoring everything and the doctor visit schedule, etc. (Only because my own research online seems to suggest this is the most common way to treat Stage III breast cancer). The problem is there has been nothing beyond chemo and blood tests. For example, I expected some advice on nutrition because it’s hard to eat normal foods when everything tastes bad. Perhaps to even talk to a nutritionist. It’s important to eat more than Jell-O! Yet no one has talked to me about it beyond, “How’s your appetite?” Although I’ve told them “poor” the last 4 or 5 visits no one has commented on it. They write it down and go on with the next question as if I’m a research project and they’re just gathering data. When I directly ask they say, try to eat better. The only nutritional advice I’ve gotten is online (where I learned it’s important not to lose weight while undergoing chemo) and from my nephrologist who was concerned about my potassium and magnesium levels. The oncologist never even mentioned they were off as if his only concern is hemoglobin. This is scary to me as I am a whole person, not just blood and cancer. I don’t want to rid myself of cancer by forfeiting the rest of my health. Which leads to…

7. The doctor seems to think quantity of life is more important than quality. I may be misreading this, but it’s hard to tell because he won’t answer my questions about what happens after chemo. The first time I asked him what happens after the chemo is over he just said matter-of-factly, “Then you’ll have a mastectomy.” I was shocked at this because we had never discussed this. We had discussed lumpectomy. I reminded him of that and asked him if a mastectomy was necessary. I think this is the point he really started getting annoyed with me. He said for me it was the way to go. I asked him why? He said it was too soon to discuss. But it was clear he had already decided so I pressed him to explain why lopping off my breast was preferable to removing the lump. His response was because it is shrinking so fast there may not be a lump so we take the whole breast and that way we can chop it up and see if there is any cancer left. I asked if this was purely done “just in case” as a preventative measure or if there was a medical reason to do it. Wouldn’t a PET scan tell him if there was any cancer left? I still don’t know. He looked at me as if I was insane. Certifiable. This was the end of the conversation. Again he insisted it was too soon to discuss it. and quickly left the room. I had no choice but to let it go that day. Another day I tried to discuss it with him again. I told him, I need to understand what the steps are (after the chemo) that he'll take to decide what options I have. I told him I wasn’t questioning his authority; I just needed to understand everything. I want to be sure that what I am putting myself through, will be worth the outcome. Again he insisted it was too soon to discuss it. This only worries me more. It tells me that whatever lays in store can’t be good because he would offer nothing beyond the very next chemo treatment. And I feel he is denying me the power to make decisions based on my own priorities.

8. There has been no concern (at the center) about how I’m doing emotionally (or my family for that matter) or suggestions for dealing with this. I might as well have the flu. Even though, like the poor appetite, I’ve told them I often don’t sleep well unless I take a sleeping pill.

9. It has become clear to me that the doctor and his staff have no regard for any one’s time but the doctor’s. They have no trouble calling me at the last minute and asking me to come at a different time than scheduled. Never mind that I’ve had an appointment for over a week, at a time they initially insisted on. I’m coming from 80 miles away. I often am relying on someone else to take me who has arranged their schedule to accomodate me. Sometimes I have scheduled appointments with other doctors on the same day which they are well aware of. Then they become highly annoyed if I’m unable to change my schedule to suit their whim. My last appointment they asked if I could come early in the morning because the doc had hospital rounds in the afternoon. I told them, no problem. I arrived 20 minutes early, was the second appointment and I still waited two hours after my appointment time before the doctor came in. Why? I don’t know. Maybe he decided to do his rounds first. Then he told us, based on LAST WEEK’S blood work, he decided not to do chemo that day. Now tell me why he didn’t call me and tell me this and save me the trip (and gas $)? Not to mention the prescription I took before leaving the house in preparation for chemo that I now have to refill - another $24. And Luke and I both missed another workday unnecessarily.

These are some of the things I was and am angry about. The ones that immediately come to mind, anyway. I have better control of it now because I think my hormones have leveled off some. At least the vaginal bleeding seems to have stopped. And as I said before, this week off from chemo has done me some physical and emotional good.

I just did a word count – 1550 words. That’s a whole chapter. Which reminds me, I should be working on my young adult fantasy novel not complaining about my current lot in life.

The happy thing that happened: Got a postcard from Egypt where my sister Sharon took a two-week trip. How cool is that?

There's nothing quite like a bald lady with a fake tatoo to get ya goin'.

Six (not quite) Million $ Day

Today - two ultrasounds and a bone scan. Relatively painless. I had fun driving my little car instead of the van. I got a Dean Koontz book on CD from the library to listen to on the trip. It's really spooooky!

I'm feeling really good today. This extra week off from chemo has been good for me. I'm better, stronger, faster. I've been singing and whistling through the day today, feeling just like my old self. I even rode my bike some yesterday.

I'm sure gonna hate starting chemo up again. Don't worry, I didn't forget I said I'd tell you about the emotional side of this fun house ride. But not today. Maybe Saturday, when I have some time to really dig into it. For today, though, I'm hanging on to feeling good physically and emotionally.

Happy thing: Fun with tatoos! Not the real ones, the temp kind. Luke'll post a picture. But for now - time to make some cookies while they taste right.

Delayed Treatment

No treatment today. Liver functions are not quite right. He wants to let me rest another week before hitting me with more chemo. In the meantime, I have to have an ultrasound and a bone scan. Why the bone scan? Because the result from the blood test that appears to be a liver problem can actually be something with the bones or gall stones or whatever. That'll be Thursday. At least they rescheduled the pelvic ultrasound (that I was to have next Thursday due to the extra vaginal bleeding) for the same day. That'll be a big day.

It'll be nice to have a break from the chemo, but this throws off my whole schedule. I'll have to fix my calendar. I had all my treatment dates written in.

Good thing: Had my car fixed. No more rattling mixed with chirping birds and now it's save to drive it to Shreveport.

Long Awaited Blogging

Greetings from Cancer World. Be warned, this entry's going to be a long one. First let me say I'm alive and doing fine. Fine, at least, for someone in the middle of chemotherapy. I'll give the happy news right up front. At the last blood test, about a week ago, my creatinine was back to normal, 1.1. The doc couldn't really explain it, but let's not look a gift horse in the mouth.

Emotionally I've been going through a rough patch and haven't wanted to communicate. I've been swinging from one emotion to another and I didn't want to write anything and put it out there for fear I'd regret it later. I seem to be leveling off now.

I've also been taking a good hard look at just what my purpose is with this blog. Do I just want to use to it to inform family and friends that I'm still here, hanging in or do I want to go deeper with it? Every time I sit to write I wonder am I going to just wave and say, "Hi guys, still alive" or am I going to share the whole process of this illness including the really tough stuff? Some things are so personal that I've stopped short of sharing them. Will it embarrass me? Will it embarrass my family and friends? When I started this I didn't consider that there would be things that I would be embarrassed to talk about. But it turns out there are.

Lately, I've had some questions about what's to come over the past few weeks and I'm going to have to call one or two of the women I know who've been through this to find out what happened to them. And I'm thinking, what if, later, someone going through this themselves has questions for me? I'm beginning to feel like I need to keep a more accurate record and that leaving things out is dishonest.

Considering some of the previous entries recounting how awful I was feeling physically, you may be wondering what I could've left out. What could be worse than feeling like you're decaying inside? Nothing really. I was just embarrassed to mention certain things. And the more I thought about it, the sillier that embarrassment became.

For example, almost from the very beginning I've been dealing with a hemorrhoid problem. Naturally, associated with this is blood in the stools. For this reason I had to go to a Colon and Rectal specialist, who I fondly refer to as The Butt Doctor (or as Luke would say, "the one we don't talk about"). Let me tell you, I'd rather have a gynecological exam every day for a week than go to The Butt Doctor once. He gave me some cream and some fiber powder and instructed to me to sit in a tub of warm water for 15 minutes three times a day. This is impossible. Am I allowed no life at all? And have you ever tried to swallow the slime that's created when you add that powder to water or juice? I did it twice and that was the end of that. I did find some fiber wafers to chew that sort of taste like sweet tarts. The problem with them is you have to take two or three and drink eight ounces of water with each one. That's not so bad by itself, but working it into my drug taking regiment is crazy.

Have I mentioned my medication schedule? I take 13 pills a day. Some on an empty stomach, some with food, some with eight ounces of water, some can't be taken at the same time as others. Theoretically I have morning pills and evening pills, but the ones that require all the water have to be spaced out so I don't drown. I start taking my morning pills at home about 6:30 a.m. and finish some time around 9:00 a.m. at the office. Of course, I'm not counting the ones I take on chemo days and the four days following to prevent nausea. Nor am I counting the shots I have to get, one every two weeks and the other every three weeks.

But I digress. At first The Butt Doctor said I might have to have a colonoscopy. After the treatment regiment for a couple weeks and then trying to schedule an appointment on my "off" weeks (no chemo weeks) I had to go back this past week so he could examine me again. Since there have been no more bloody stools I think I'm safe from the colonoscopy.

Another problem I'm having is this - wait - first any men reading this might want to skip this paragraph. I know how these things make you uncomfortable. However, you women can sympathize. My hormones have gone crazy. In the last six weeks I've had menstrual bleeding three times for six or seven days each time. The first off-cycle bleeding came about two weeks early and then every other week thereafter. The first time it happened I asked the nurse practitioner who said chemo could mess up your cycle. Everything I've read has said this also. The third time it happened I told the oncologist who said chemo doesn't do that and I needed to go see a gynecologist to find out what else was wrong with me. He said it can stop your cycle, but it doesn't cause frequent recurrences. This seemed awfully coincidental to me, though, considering my cycle is like clockwork every 28 to 30 days without fail and never for more than 3 days. Now I'm bleeding for seven days every other week after a couple of chemotherapy treatments? So this past week, not only did I see The Butt Doctor, I also saw the gynecologist. Fortunately I really like this gynecologist. (When she walks into a room you immediately feel at ease. As if she's got some sort of positive aura surrounding her.) She says she thinks the bleeding is from the chemo and that it should stabilize. I have to call her if it comes again too soon. She didn't want to add hormones to what I'm already going through. See why I like her? I do have an ultrasound scheduled for June 9th just to take a look-see and be sure there's nothing else going on. My next chemo is Tuesday, the 31st and June 9th should be my follow-up visit for that too. Anytime I can double-up trips to Shreveport it's a good thing.

I don't know if I've mentioned that every time I talk to the oncologist or one of the nurses they ask if I have any sores in my mouth. They warned me the sores can get pretty bad, and sometimes people are hospitalized to control the pain. About a week and a half ago my mouth finally broke out in the dreaded sores. It was the strangest thing. I was sitting at my desk at work when suddenly I had two sores. It was just like that, too. My mouth was fine one instant and then, bam, sores. By the end of the day my mouth was full of them. Now I have, added to my already busy schedule of drug taking, bathing, working, etc., two (not one) mouthwashes to be used three times a day. I spend more time in the bathroom then anywhere else. Fortunately, the sores have cleared up and my mouth feels okay again. I'm worried about my teeth moving, though, because I can't wear my retainer. I'm afraid it'll rub the inside of my mouth and bring on sores.

That's about it for the physical problems, I think. Later, I'll tell you about some of the emotional stuff.

Half Way Home

Finished with number 4!! Just 4 more to go. This is actually going quicker than I thought. When it started I thought, six months of treatment, how will I make it through that long? That's half a year! Impossible!! It can't possibly be worth it. Now that I've made it through the last three months, three more months doesn't sound so insurmountable. As you can tell by the last few entries, it has been getting tougher. But now that I'm done with the AC part I'm hoping the T (taxol?) won't be so harsh.

The blood transfusion must have done me some good. I saw the nephrologist before going for chemo and she was happy with my numbers. Tra la la la la. Most significantly my potassium was back to normal levels. Creatinine is still at 1.4. Hemoglobin - good, almost normal. She and the oncologist were in agreement that pushing on with treatment four was okay.

Today's treatment was pretty much uneventful, which was a relief, considering the last couple of visits. The oncologist says the lump in my breast is now about the size of a pencil eraser. Whoohoo! Can I kill a cancer or what? Stage IIIC - kiss my a--.

Did I mention the port turned around again on Friday? Yep, can you believe my luck? I knew when I woke up. I knew what it was supposed to feel like and it wasn't right. Since we were going to Shreveport anyway that day, for the Congressional Art Contest Award Ceremony, we went to the surgeon's office that afternoon and he turned it around again. It's still a little sore. He said he'll take it out after the chemo is done. This made me very happy. I wasn't looking forward to keeping it, because it bothers me a lot. Hell, it hurts when it flips. (Of course, I didn't really feel it flip, because I was still fighting the migraine and was heavily dosed on hydrocodone). Normally they want to keep it in (just in case) for a of couple years.

The good thing that happened today: I packed a lunch to take with me, just in case something went wrong. Luckily, I was finished by one o'clock (no complications) but I was glad to have lunch with me anyway. I'm really getting tired of eating out and especially fast foods.

Things I want to do: Go to France or maybe Prague or the Vatican. Somewhere with thousands of years of history.

Jeremy Wins Congressional Award for art.

Jeremy recently won an award for his artwork in a state contest sponsored by Congressman Jim McCrery. Here are photos from the event.

Just another day

Today is treatment number 4. It's the last one of this type. The good news is the doc says the next 4 treatments won't be as hard on the kidneys. Bad news is it has it's own side effects. Like anything, it all depends on the person so can't say how it'll go. I have to get through the last one of these first anyway.

This has been a rough week. I had a migraine for 5 days, then it downgraded to merely a really bad headache. I still have it and we're on day number 9. I've taken Demerol, hydrocodone, Tylenol, ibuprofen and even been to the hospital for shots. Nothing works for long. I'm beginning to think I have a blood clot or had stroke or something. (Okay, I'm joking here, please DON'T PANIC!)

The really great thing that happened this week: Jeremy entered a Congressional Art Contest (each Congressional district has one) through his high school. All the high schools in the district enter pieces (about 12 schools). There were over 100 entries. His piece won Outstanding Technical Merit. It was one of the top 5 prizes. The top one won a scholarship to an art school and the other 4 got these beautiful plaques and a $50 cash award (Jeremy particularly liked this). Luke will put up a picture of it. It's what is called scratch board. It's black and you scratch away the black stuff to make the picture. It's awesome, if I do say so myself.

The picture with Jeremy in the tux is for the Junior Prom. Isn't he handsome? The "Eyes" you see behind him is another one of his art pieces. It's a charcoal sketch.

Well, I must go dress for the trip to Shreveport. I've finally gotten smart and packed a lunch.

Proud Mom with Son.

Blood

Went to the doc on Thursday. The good news is my potassium was much better. The bad news is I was WAY anemic. The doc said I was blending in with the walls which were this yellowish-beigeish off-white color. What I had expected to be a 30 minute doctor visit turned into an all day thing because I had to have a blood transfusion. Yes sir, yes sir, two bags full. He said I'd feel like a million bucks afterward. Sadly, I fell a little short of a million, but that may be because I also had the aranasp shot which makes me ache. It did take care of the heart palpitations and shortness of breath though. I guess it wasn't love after all.

Now that most of the effects of the shot have worn off I do feel a lot better and more energetic. And the headache is gone. Woohoo.

Hopefully my sense of humor will improve too. While talking to the nurse who was giving me blood I made some lame joke about needing blood due to a nocturnal visit from a vampire. (Pathetic). She gave me that polite smile we give people who tell awful jokes that aren't funny, but we don't want to hurt their feelings. You know, half a smile, raise the eyebrows, nod the head slightly, utter, "Ah." I felt compelled to apologize. I told her I was weak and tired and had a tremendous headache and I promised to be wittier when I felt better. Without missing a beat, she patted my arm and said, "I'm sure you will be."

It really did take all day. They offered me a room with a bed so I wouldn't have to sit in the chemo chair for long hours on end, which can get pretty uncomfortable. It was a pleasant room with a big window looking out over a big tree that was blowing in the wind. I had my book and a television and an adjustable bed. And I was there from 11:00 am until 4:00 pm. They have to give the blood very slowly. I believe that's so it doesn't overwhelm the kidneys and cause kidney failure. I'm sensing a recurring theme here.

They brought me a BLT, which was disgustingly smothered in mayonnaise, and some potato chips. Thankfully, one of the pink ladies kept coming around bringing me graham crackers and juice. That may be another reason I didn't feel like a million bucks when I was done. I ate a bagel at 7:00 am and the only other food I had until 7:00 pm was graham crackers and chips. Next time I go to the doc or for chemo or anything I'm packing a lunch and bringing my laptop.

The good thing that happened: I had a $10 off coupon for Lowe's so I went by there on my way home and bought some flowers and two hanging baskets.

Nuttin'

I've got nothing to say today. But maybe that's a good thing. At least I'm not complaining.

We've been having this awesome weather lately. (Uh, oh, it's pathetic when you're reduced to talking about the weather.) It's cool outside, but not cold and sunny. Perfect being-outside weather.

Tomorrow I have the 10 days-post-chemo doctor appointment and blood tests and shot. Hopefully my numbers will be better this time. I'm trying to eat bananas and drink orange juice and whatnot. The only thing I have to complain about is I'm having some heart palpitations and shortness of breath. But hey, maybe I'm just in love.

This is totally unrelated to cancer (go ahead, say it, "OH at last!"). The other day I was watching The Daily Show with John Stewart and they showed this clip of a chimpanzee smoking a cigarette! It was the weirdest thing! The curious thing was that chimp looked more natural and at ease smoking that cigarette than I ever did and I smoked for 14 years. I kept thinking, maybe it was a man in a chimp suit. Only it wasn't. I hope you get a chance to see it, if you missed it.

I told you I had nothing today.

Three down - five to go

My third chemo almost didn’t happen because my blood work wasn’t good. My red and white blood cells were low, my creatinine was high(er than usual). For the benefit of those who don’t monitor their kidney function on a regular basis, creatinine is what they use to measure how well the kidneys are doing their job of flushing out the bad stuff. In a nut shell, high creatinine means not flushing so well. My oncologist called my nephrologist (who’d of thought I’d have so many specialists of my very own) to discuss it and they decided that it would be okay to go ahead with chemo this time.

While having chemo I met a woman who had lymphoma. She was finished with her initial treatment regiment, but had to return every six months to have chemo once a week for four weeks. This is how cancer changes people's lives forever. She also finished the book she was reading and gave it to me. It was such a nice and simple gesture that now I think I will bring the books I have finished with me next time and give them to other patients.

After the chemo I had go to the lab and pee in a cup for the nephrologist. While waiting my turn the nurse who did the chemo came running in - the nephrologist had sent her after me to give me potassium. I already take potassium supplements, but apparently I needed more. These pills are very hard to swallow. They are big and rough and get caught in your throat. It’s worse if you break them in half because then they have rough edges. The nurse stood over me and made sure I took them right there in front of her, which I thought was pretty funny. After all it was potassium, not an anti-psychotic.

So I survived chemo three adding an extra appointment to see the nephrologist. When I got home I felt pretty yucky and wiped out. But I found a letter in my mailbox from the 12 year old daughter of an old friend. She had even included some pictures. Perfect timing.

Thursday I saw the nephrologist. She showed me the lab work and while my creatinine was a little higher than normal, it wasn't terrible. It was 1.4. Before starting chemo it was at 1.3. For perspective, normal levels for an adult female are 0.5 to 1.1 and dialysis is needed when you get to 10. So it's higher than normal, but not panic time. She was more concerned about my potassium level. Now before chemo I have to see her, too, not just the oncologist.

Thursday after treatment is the lowest day for me, so when I got home from the doc I just fell into bed and slept a few hours. The rest of the day I slept off and on in a recliner.

I'll try to describe how this feels. It's not like just being exhausted. It feels like dying. And not like I imagined that would feel like. It's not a spiritual kind of feeling. More like decay. Your skin hurts on the inside, like a low burning feeling. Only you feel cold on the outside and you can't get warm. Fortunately, the worst of that is Wednesday night and Thursday. Friday is mostly weakness. I went to work on Friday for half a day because I couldn't bear sitting home all day.

Here are some other fun facts about chemo: I now have a constant bad taste in my mouth. I suck on these frozen juice things that help with that a lot and they give me more liquid. I have to drink a lot of liquid. Since starting chemo my blood pressure has been steadily dropping. Yesterday my pressure was 103 over 60 so I didn't take my BP med. I have a minor headache most of time. Even on my good days I can't do too many things without stopping to rest. This is frustrating. It's like I'm 70 instead of 41. And, speaking of getting old, I've noticed a lot of new wrinkles. My face is starting to look aged. I hope this is a temporary thing and perhaps seems worse because of the baldness.

That's enough complaining for now! It's a beautiful day outside. In fact it's cool and I'm going to open the windows and air out the house.

And did you see the soccer cake I made for Jeremy? Pretty funny, huh? Well it was my first attempt and I was making it up as I went along. It's not like I had a special pan or anything. I baked the cake in an oven safe bowl to get the round shape.

Jeremy won Soccer All-District Honorable Mention as a defender. This is something all the coaches in the district vote on. Considering he's on the second to worst team in the district, I think it's pretty awesome that the other coaches noticed him and voted for him.

Forgetfulness or A funny thing happened on the way to chemo

I’m back. Did you think I just quit blogging? I know I’m way behind, but it’s getting harder to do this. When I started I thought it would be easy to log on each day and jot down a few things about how I was feeling. "Today is a good day. I got out of bed." "Today is a bad day, I can hardly move." But the truth is the chemo is getting harder and I’ve just been too weak and brain dead to think, let alone blog. Mostly this week I've been sitting and sleeping and waiting to feel better. And when I do feel good I want to use what little energy I have doing enjoyable things like being outside planting flowers or even just doing mundane things that make me feel normal. Like laundry. I know, sounds crazy, but the pure normalness of folding clothes makes me feel better. And I don’t have to think at all to fold shirts.

Monday I had my third treatment. But before I tell you about that I want to tell you about the stupid thing I did (or why I love living in a small town reason no. 36). These days there are so many things happening that I have to write everything down just to keep track of everything. Things like doctor appointments, days I have to have shots, chemo days, etc. If I don’t write it down on a calendar I forget.

Last Sunday evening about 8:30 I was going over a checklist in my mind for the next morning’s chemo treatment. That’s when I realized that I completely forgot to have my Emend prescription refilled. This is the med that I take an hour before chemo to prevent nausea. A very important pill, but I didn’t panic. I thought I’d have to have the doc call it in at a Shreveport pharmacy. Then I’d just have to kill an hour after taking it before having the chemo. No problem.

That’s when I remembered this is the med that the pharmacy has to order a day ahead of time. The pharmacies don’t stock it because it’s so expensive. Now I’m kicking myself. I know my pharmacist should have it because he said he’d order it for the next treatment each time I filled it. My doc appointment was for 8:10 a.m., which means I have to leave my house about 6:45. I thought maybe if I was lucky the pharmacy opened early, like around 7, and I could get it just before leaving town. I’d be a little late, but hey, at least I wouldn’t be sick.

This pharmacy also offers online services and durable medical supplies and stuff. So I went on-line to see if I could find the store hours. They didn't have the hours listed, but they did have a 24-hotline number for some of their services. I called that number just to see if they could tell me the store hours. I found myself telling the answering service why I needed to know when the store opened and he very rudely informed me that they didn’t open until 8 o’clock. But just as he was hanging up he said, “But I’ll tell Mr. Causey you called.” A few minutes later Causey called me. This is why I love living here. At 9 o’clock on a Sunday night, in his undershirt, the pharmacist met me at the store and gave me the medicine I needed for the morning. And he was perfectly cheerful about it even though it was my own forgetfulness and my own fault that I didn’t have it. Can you get that kind of service elsewhere? I don't really know, but I do know that here that sort of thing is not extraordinary.

Jeremy's Birthday

Here's one of Jeremy's customized guitar picks that he got for his birthday. The symbol stands for Truth and Life.

Here is the soccer ball cake Dawn made for him.

Postscript

Back from doc.

The good news: The doc agrees it's not my imagination. The lump in my breast is considerably smaller.

The bad news: still anemic. The shots aren't doing their job well enough. We've added iron supplements. The doctor was quite surprised that I was feeling fine and still working and gardening and such. What he said was that I was "curiously asymptomatic" considering my blood levels. Then he laughed and said now that I knew, I'd probably be exhausted. He was joking, but little does he know, I'm totally suggestible and probably will be tired now. Thanks doc.

Looking forward to Jeremy's soccer banquet tonight.

Ordinary days

Last week was like ordinary life. I felt good. I wasn't tired. I worked a whole 40 hours. I went out to lunch with friends. Over the weekend I cooked and did laundry. I cleaned up and weeded the flower bed and planted flowers. Then we had a storm that battered the new plants. I hope they recover.

What I didn't do was any writing or blogging. As much as I enjoy sharing deep thoughts, (not to mention being in love with my own words and ideas) after all day in front of a computer at work, I couldn't bring myself to open my computer at home. And the weather was so perfect Saturday and Sunday I just had to take advantage of it. But I was happy to have an uneventful week.

Uneventful, except that Jeremy was confirmed. I had plenty of deep thoughts that night, but I think I'll keep them to myself. In my older age I'm starting to learn some self-restraint when it comes to sharing everything I think about.

Expressed concern from family and friends and perhaps a moment of common sense has led me to change my work hours for the duration of treatment. I'm going back to eight hour days, five day weeks. I'm going to miss my Mondays off, but ten hours/day was too much some weeks.

Yesterday I got a call from the surgeon's office. He wanted to see me before the port surgery. He just could not believe the dang thing had turned around. Of course, he knew it had, because he'd seen the CT scans. Perhaps you heard about the storms and flooding in Shreveport yesterday, the traffic fatalities. The good thing that happened yesterday (for me) was that the clouds blew away and everything dried up before I had to drive up there.

Anyway, the doc turned the port around. Just squeezing it through my skin he moved it around and flipped it over. Yes, OUCH! But worth it. It looks like no surgery today. Unless it flipped again while I slept, but I don't think so. It's protruding from my chest once again. I can really feel the difference. I have an appointment with the oncologist today and will have blood drawn from the port. We'll know for sure then.

Here's a happy thing: I still haven't lost my eyebrows or eyelashes. Woohoo! Being bald isn't so bad. The hats are comfortable and, still having eyebrows and eyelashes, I don't look sick. Also if I get hot at home I just take off my hat and instantly cool off. Unfortunately, the hair on my legs is still growing. No shaving my legs was supposed to be a good consequence of chemo!

Another happy thing: I can't feel the lump in my neck anymore! That doesn't mean it's gone, but it does mean it's smaller which is what this chemo is all about. The one in my breast is also changing and is harder to find. Everyone clap your hands and say yippee!

Now I'm off to see the cancer doc.

Jeremy's Confirmation

Okay - it's kind of off-topic but here are some really bad pics of Jeremy's confirmation taken with my cell-phone cam.

Two down - six to go

Last Monday I had the second chemo treatment. This post has been a long time coming, but this time chemo kicked my a--! I'm not really sure if it was the chemo or the shots on Tuesday and Thursday or trying to work 10 hour days. I guess all three combined to wipe me out. I was too tired every day to think about blogging or to do anything. Wednesday I went to work, but soon went home. I tried again Thursday and stuck it out all day, but that was a mistake. Friday I was too weak to move all day. I just sat in the recliner.

You can't imagine how tired and weak you can be. I felt like I was 100 years old.

That's not the really interesting thing about this second treatment though. No, the fun began Monday morning when I went for chemo. Luke went with me, even though I thought I could manage on my own. That was the good thing that happened that day. We arrived at the Cancer Treatment Center about 10 am. Each time the first thing they do is take blood, then you see the doctor or nurse practitioner, then have the chemo. This time, however, the substitute nurse (Mary wasn't in) poked the needle into the port only to have it hit a wall. She poked and poked again and could not get in. Then she grabbed another nurse who also poked around. Yes, that's right, they were stabbing me in the chest with a needle over and over. Granted it's a tiny needle, but still.

Anyway they wanted to know if the port had been accessed before. Of course, I told them. Patty, over in chemo had no trouble. So they called Patty and she came in and said, uh oh, the port turned around. It's backwards. It happens.

What does this mean? I'll tell you. It meant I spent the day waiting on radiology to take x-rays to make sure it was backwards. Then waiting on CT because the dang thing is plastic and can't be seen on the x-ray. Then waiting for the radiologist to come and decide if he wanted to try to turn it around. (Don't ask how, I don't want to talk about it.) Then finally, after all day, they had to inject the chemo right into my arm. Have I mentioned before what terrible veins I have?

Patty put a hot cloth on my arm. I guess that makes the vein easier to stab. For the first drug Patty told me that if the vein is punctured and the chemo leaks it'll cause third degree burns and she instructed me to scream if I felt any pain or burning. These are her words, "don't be brave, scream immediately." These are not words you want to hear when someone is sticking a needle/tube in your arm.

But, thankfully, she knew her stuff and I wasn't burned. Luke ran out and got us some dinner and we ate while I had the second drug. We finally finished and could go home a little after 5 pm. That's right, seven hours at the hospital. Then we had the drive home. It was a long day and if Luke hadn't been there, I might have mortally wounded one of the x-ray techs.

You are probably wondering how the port got turned around. Patty said probably because I sleep on my side and I'll have to stop sleeping that way. Is she kidding? Have you ever tried to change the position you sleep in? What new hell will I have to endure?

That's not the end though. The port is still backward. I have to have surgery again to turn the port around or replace it before my next chemo treatment. And they have to stick my arm again to draw blood before surgery. The joy never ends.

The good thing that happened: Saturday was our local Jazz/R&B music Festival (easy on the jazz) and the day was beautiful. I felt good enough to go out there for a couple hours and see Luke perform with the NSU Jazz Band (probably the only actual jazz at the festival) and see a few other bands too. Not to mention seeing friends we haven't seen for a while.

Things I want to do: Can you believe I can't think of anything I want to do?

Photo Time

Love that wig.

Dawn and Jeremy - Easter Sunday