Done!

I'm done. Had the last radiation this morning. And when I got home the first thing I did was jump into the shower and scrub the marks off my breast. I finally feel clean again! My breast is pink and my armpit is angry red. My nipple is peeling and my neck is raw, but now I can finally start healing. Yesterday they gave me two creams to put on the various shades of red and they really help ease the burned/raw skin.

Now, maybe I can start to get my life back to some semblance of normal. For instance, I can wear deodorant under my right arm again! I can wash my own hair and my entire body for that matter and not worry about trying to keep the soap from washing away lines. I can go to work at normal hours and start earning leave instead of using it all up.

I'm not really finished with cancer and doctors and such completely. I still have to have the tests and see the docs in thirty days. Then every three months see the onc again. And worry every time something doesn't feel right that it's come back. The reality is that chances are high that it'll come back. But for now, treatment is OVER! No more poison. And who cares what the odds are? My entire treatment has been atypical. Why stop now?

Anyway, I feel like I'm coming out of darkness. You could even say it's . . . wait for it . . .

The Dawn of a New Day.

Sorry, couldn't resist.

2 . . .

In a little while I'll drive to Alexandria for my second to last radiation treatment. I can't believe I'm almost finished with treatments.

In the last post I was mistaken about the severity of the skin burns. The onc told me it wouldn't get any worse than it was a week and a half ago, but it surely did. The weekend before last it just intensified. My neck became very red and painful. They gave my neck/collarbone the last radiation on Tuesday, but it just seems to get more painful. And my armpit has joined in the fun. I can't even wear a bra. Even the camisoles are uncomfortable. I took off from work starting last Wednesday and I'm supposed to go back this Wednesday. I hope I heal enough by then to wear a bra.

Now they are only treating around the scar on my breast. The last five treatments they concentrate on that area. If the cancer comes back that's a likely place for it so they really want to zap it.

I'm not sure if I talked about the prickly skin reaction I get sometimes. It happens if I get hot or if I get too stressed or if I exert myself too much. Then it's like my skin attacks me and it stings and prickles all over like ants biting or something. It's horrible! I'm sure this is left over nerve damage from the taxotere. I don't know if it'll ever stop. Now I'm starting to worry about doing the Susan G. Komen walk/run because walking a mile might bring on this reaction, especially if it's warm out. I'm really dreading summer.

Just two more treatments and then some time off for good behavior (about a month) before I have to go back to Shreveport for PET scans and CT scans and blood letting and seeing the analytical oncologist.

7 . . .

It's Saturday and I've still got seven to go. Unfortunately the broken machine put me back two days. Typical of how every little thing has gone on this wild trip.

The other people who have done this before me didn't lie when they said this would be the easiest part. The driving is not so bad with my books on CD from the library. The wait at the Center is never long, either. The doctor is pleasant.

Shall I update my symptoms? I'm a little tired, especially this week. Some of that, I'm sure, is from going later in the afternoon because they're fitting me in on someone else's machine (the machine I was being treated on is still being fixed). But I'm sleeping good at last (and in my bed, not in The Chair). They told me it would be like a really bad sunburn. Well, it is like a sunburn and a little itchy and blistered at places. But frankly, folks, I have had a really bad sunburn and this is just an ordinary sunburn. Doc said it has gotten as bad as it should at this point. The remaining treatments shouldn't make it worse. Which is great, because I've dealt with this sort of irritation many times in my life and that's all it really is, an irritation. Some of my bras are particularly aggravating, but I have some camisoles with support built in that I can wear instead of a bra.

All in all, I'm feeling pretty good about all this winding down. I just wish the little things that keep occurring to extend the treatment time would stop. Enough, already!

Referring to the treatment being pushed back two days someone said to me, "Yes but, you must see the light at the end of the tunnel." Actually, several someones have said this to me. My response to that is, of course I do, but...

Remember learning to swim? Mom or Dad would say, "Swim to me, I'm just right here." And you'd let go of the edge and paddle with all your might. And as you got closer they would keep moving back. That's what it feels like. And no matter how much encouragement they gave, "See, you're doing it! Your swimming. Come on!" you started to tire. Like that kid I once was, I want to yell, "Stop moving and catch me!"

But I keep swimming.

9 . . .

I got my computer back and I'm back online. I should have only 8 treatments left, but you know nothing ever goes as planned. Today I got a call from the radiation tech telling me their machine is on the fritz. Boy does that inspire confidence! Anyway, it was good of her to call me before I made the trip down there. And impressive that she reached me, because I leave at 5 to seven in the morning. Now they're waiting on a part and expect it to be up and running tomorrow. That pushes radiation back at least one day. I hope that's all. We're getting dangerously close to my birthday and we've already passed the one year mark on this whole nightmare.

I'm not going to make a big entry today, because I'm working on some other writing. I do want to mention, for you few friends I have stopping by from the children's writing community, an upcoming open forum on the ICL chatline. The topic is: "Writing for Teens" and the guest speaker is Lauren Barnholdt. She is the author of the upcoming REALITY CHICK from Simon Pulse, junior agent at Firebrand Literary, and co-author of an upcoming book about writing for teens. Should be fun and interesting. It's on Thursday evening 7-9 central time (you can figure out the time in your timezone or drop by ICL).

The good thing that happened today: spoke to the financial aid person at ULL and there may be some financial aid for Jeremy's tuition (besides TOPS) based on all the money we've spent out-of-pocket on medical expenses. Wha-hoo

13 . . .

My computer is tired and has been taken to the computer doc so I've been unable to log on. I'm at work now, unable to work, because our systems are down, but our internet is up (go figure). I thought I'd use the "free" time to stop by and jot down an entry.

Everything is going well. I'm still driving myself to radiation treatments. Going in the morning was the right idea because I'm not too tired to drive myself. Just 2 1/2 weeks left to go.

I met a woman the other day at the cancer treatment center. She walked right up to me (I was sitting in the waiting room) and put her hand on my head. She squealed, "You've got hair! Oh, I can't wait until I have hair and don't have to wear this wig. All I have is fuzz!"

I don't have much hair, but I stopped wearing the hats. It's just gotten too hot. Then, last Friday, I got a haircut (because I had a lot of that baby fly-away hair) and had it colored so I'm not salt and pepper anymore. I'll have Luke post a picture.

Now some business. There is this 5K run/race that raises money for breast cancer research put on by an organization called The Susan G. Komen Breast Cancer Foundation. Anyway, they have these events all over the country. There is one coming up March 18 in Lafayette, La and I'm playing with the idea of trying to get as many people as I can (I really don't know that many people, but still) to meet me there and do the thing. I certainly can't do the 5K (and honestly, neither could most of my friends or family), but they have a one mile walk as well and that we could do. The entry fee is how they raise money and that's $20.

Here're some problems I've thought of (my mind is so very good at coming up with reasons why not to do things): The thing is in the morning, and most of us live about 2 to 2 1/2 hours away so it would probably require an overnight stay. That could actually be fun, but I'm totally unfamiliar with Lafayette, so how would I entertain everyone? And what would we do afterward? It only lasts a couple hours and, again, I would feel responsible to entertain everyone. It's about 5 1/2 weeks from now and I don't know if that's too soon for people to make plans. So, you see, I'm very unsure of the whole thing.

What I'm doing right now is feeling people out. I've got two people who said they'd like to do it. If anyone is still reading this blog, please email me or make a comment on the blog and let me know if you would go for it. There's another event in September in Shreveport, but that's a whole heck of a lot farther for everyone, but me.

And one other thing, Happy Birthday, yesterday, to Susan. You'll always be older than me.

17 . . .

I'm getting very tired now. I get home from the trip and take a nap before going to work. And I'm going to bed about 9:30, but still I'm tired. It's weird because the radiation doesn't feel like anything. It doesn't make you nauseous or anything. I do get a sharp pain in my armpit occasionally. It's not bad, but they offered me pain killers for it. They are free with pain meds for the cancer patient. I think that's a good thing, but it would be easy to become dependent.

Tomorrow I'll have a renal ultrasound. Of course, my back (kidney) doesn't hurt anymore. I'm so so tired of tests!

I'm losing my computer for a few days. It needs an overhaul, poor faithful servant! So I may not be logging in for a bit.

In the meantime, Happy Groundhog Day!

19 . . .

Yesterday I went to this program for women with cancer called "Look Good, Feel Better." Ideally you would do this early in your treatment because they give you tips on wearing a wig and skin care and such. They also give you a bunch of free makeup and show you how to properly apply it. Sounds fun, huh? Not as much as you might think. It was me and three old ladies. One of them brought her husband and 15 year old grandson. Weird!

The drive is getting to be automatic. I went to the library and got a couple of books on CD and I listen to one of those on the road. It's weird listening to these things. It takes some getting used to. Some are no good because the readers aren't good and you're too aware of the reader to focus on the story. Others are read with flare and you get right into it. At the end they say something like, "Thank you for reading audio books." Which is an oxymoron, I think, but they want people to feel like they are readers. I don't know why. Experiencing the book is the important part, not the action (or inaction in the case of audio books) used to experience it.

Now I'm starting to feel like maybe I should be using that time in the car better. Maybe I should be learning another language or something. Be constructive.

Anyway, the time is passing quickly now that I've finished the first week. That week was frustrating because it seemed that each day there was something additional to be done that they didn't tell me about and I never knew when to tell my boss I'd get to work. Now I have a routine and don't go into work until noon (work till six) so I feel more flexible.

I'm still having pain in my left kidney and am waiting on a urinalysis culture done last week. Frustrating!

The good thing that happened: I've been very lucky with pleasant weather for driving.

22 to Go

Can't say much today because I haven't much time, but I wanted to sign in and say I'm doing fine. I'm having computer issues which are keeping me from writing.

I'm into the swing of driving back and forth. Then I come home, eat and take a nap before going to work at noon. I'm working six hours a day for now.

The physical therapist strongly recommends daily exercise to fight the fatigue, but I can't walk very long with my feet the way they are. They're still very painful. Or rather, more painful now that I'm not taking the neurontin. I'm hopeful the pain will ease with time. With walking out, I started riding my bike to work again this week. That seems to be working out and helping. I'm certainly sleeping more soundly. It's bad to be tired all the time and not be able to sleep.

Time's run out, gotta head out.

29 to Go

Four radiation treatments down and just 29 to go. What a wacky world! I am told I must try not to get soap on my breast because the lines they draw are with an iodine pen and they don't want them to come off. The first time they drew them was a week before treatment started. By the time I went in for the first treatment the lines had faded so much they looked like scars all over my chest. The pink lines matched my surgery scars.

Okay, here's my first rant about this phase of treatment. I was pretty frustrated when I went in on January 3rd to get the markings. I had been told before Christmas that I'd start actual treatment the first week of January. But no! It turns out I had to wait a week after the line drawing. That pushed back the cancer treatment finale another week. And there's more! Treatment isn't actually six weeks, it's really 33 days, Monday through Friday, which is six and a half weeks plus the week of waiting after going in for the marking. What all this means is that instead of finishing mid-February as I expected, it's now looking like just a few days before my birthday. My boob will still be "sunburned."

You'd think by this time I'd've learned to stop planning for the end of treatment and just take things as they come. Having to wait until the second week of January actually worked in my favor. Otherwise, I wouldn't have been able to go with Luke on our jaunt through Texas.

I used to like to say, "If it's not one thing, it's another." Like Roseanne Roseannadanna. But these days a more fitting thing would be, "When it rains, it pours!" Because I never have only one problem. Always they come in clusters. Last week I started treatment and developed a kidney infection. I finished the anti-biotic today, thank goodness, because it was making me queasy and I haven't been sleeping. Inability to sleep is actually a side effect of the anti-biotic. Not a good thing when I'm driving to Alexandria and back daily. My right arm is sore, also, and I can't raise it with the elbow bent (like I'm flying). This means I need Luke to help me undress. Fun, sure, under the right circumstances, but not when you don't have a choice.

The good thing: the radiation oncologist has a physical therapist on staff because he recognized a need that, more often than not, wasn't being addressed by either the surgeons or the chemo oncologists. The information I've gotten on how I should treat my arm and whether to wear the sleeve has been conflicting. It was a relief to get instructions I can feel confident in. I'll meet with her tomorrow about my arm and find out what I need to do.

Can't stay awake any more. I might rewrite this later, but for now I'll publish this as is.

Marked Woman

Okay, so I haven't been exactly gabby lately and I've neglected even the pretence of keeping up the blog. The truth is, I just haven't felt like turning the computer on. If I could do this while I was at work it might be different, but I can't and so this is it.

Here's where I stand. I've started radiation and have had two treatments. Last week I wrote a rant about being marked, but I can't seem to either locate it or muster up the indignation I was feeling at the time. Here's the super watered down version of last weeks appointment.

I went in to be marked on Tuesday the 3rd. This took forever and was sheer torture. Here's how it goes. They position you on the x-ray table with your breasts exposed, both arms above your head, your head turned slightly to the left (left for me, your experiences may be different, taking into account the actual breast to be treated) and told to remain still, don't move, while they take x-rays. Then they have to find the doctor to look at the films and make sure all is right, please remain still. And they leave you there for a really long time, half naked and afraid to move because then they'd have to start all over. After the doctor comes in and looks at you the tech tickles you with a pen to draw lines on you. All this time I'm thinking of "Survivor" where they make people stand in awkward positions for hours to win immunity. I concluded that I'd never win the immunity necklace because I wouldn't even try. By the time she finally let me move (I think I was in that position for 30 minutes or more) both of my hands were completely numb and my left arm was dead. I had to sit up on the table a bit before standing because of the dizziness caused by my blood starting to circulate again. Honestly, I almost cried lying on that table.

Oh, no. I can't finish now, I have to get on the road to Alexandria for this morning's treatment. Tune in next time for the continuing saga (and I'll try to remember to continue it).

Pictures from Glen Rose, TX

I had to take a quick business trip out to Greenville, TX on Friday and since Dawn was willing to come with me we decided to live "free and easy" and did some extra traveling. After visiting our friends the Nesom's in Ft.Worth were we checked out a downtown comedy club on Friday night, we headed out to Glen Rose, TX on Saturday to see dinosaur footprints in the Pawtuxley River riverbed.

Here are some pics!

- Luke

The Holidays are Wrapped Up

A belated Happy Holidays to everyone. We made it through Christmas and it turned out to be a nice holiday weekend even though everything is so weird this year. Normally we would go down to New Orleans for Christmas.

It's January 2nd now and we go back to work tomorrow. I don't want to. Three days off is not enough. I have things to do and as always, not enough time. I suppose if I had more energy I'd be able to use my time better. Yet another frustration.

The weather was beautiful yesterday and the day before, but today, believe it or not, it was too hot. I'm painting two bedside tables out in the garage and I had to stop and get out of the heat. People are saying things like, "Nearly 80 degrees on January 2, can you believe it!" But, truthfully, everyone can. Or at least those who've grown up in Louisiana. Because here you may be bundled against the wind and cold on Christmas or New Years, or running around in shorts. Sometimes both in the same year. Neither is unusual. Last year (2004) when we went to New Orleans for Christmas we were stuck an extra day because it snowed and the roads were closed.

Physically, I've been getting better and stronger, but emotionally I had a little set back today. Maybe it came out as a stress releaser after the holidays. Maybe, this whole trip has gone on too long and it's getting harder for me to "keep my chin up."

I'm looking ahead to radiation treatment. This is supposed to cause more fatigue and the driving back and forth to Alexandria won't help. I wish I knew someone there to stay with during the week for the last couple of weeks. I'd take off from work. But that's not realistic anyway because the radiation doesn't really take long and there's no reason I can't work at least half days.

I know, cheer up! The end is in sight. By my birthday, March 2, I should be finished with treatments, but not with doctors. I have tests to do in Mid-March and regular checkups thereafter.

The good thing that happened: Talked to Clint on the phone for long while. As usual, he made me laugh.

Time - there just isn't enough of it. Especially at this time of year. And, as Mom, it's pretty much up to me to make Christmas happen. Fortunately my child is 17 and doesn't need or expect a lot of presents or anything like that. And Luke does help me shop. But if there's going to be any decorating or tree or similar signs of the season than I'm going to have to do it.

I'm trying to make flannel blankets for Jeremy and Jay. I found flannel fabric with soccer balls all over it. I'll get Luke to take a picture and post it when I'm finished. I have one mostly done and will start the other tonight. I had expected to have them done and wrapped this past weekend, but nothing is going the way I plan and time keeps running out. Maybe that's a sign...

Time to talk about the last oncologist visit. My blood work was good. No blood needed. Mary (the bad nurse) took the pic line out. They were right, it didn't hurt, but it was the creepiest feeling. She clipped the stitches and told me to take a deep breathe while she pulled it out. I could feel it moving from my heart and down my arm inside my vein!! Eww!

I upset the onc too. I'll try to explain, but I don't remember exactly what I said that started the exchange that got him upset. I know I used the past tense talking about my disease. This is out of context but, in the middle of a sentence I think I said, "I was high risk...."

He said, "Don't say 'was' you still are high risk. Just because the cancer appears to be gone..."

At this point,frustrated, I turned to Luke and said, "He's just not going to be optimistic at all. He's not going to give me an ounce of hope!"

I might as well have slapped him. He stepped back and said, "No, no, I'm very optimistic! I believe the glass is half full! You should be optimistic! But you must remember the glass is half empty too. It can't be one but not the other so you need to be cautiously optimistic."

I said, "Is that like compassionately conservative?"

Poor man was flustered. I don't think he realized how negative he is sometimes. I know he has to warn me that it can come back and what to look for, but his bedside manner is terrible.

Time for work. Never enough time!!

Pic line is out - Free at last! (taken 12/1 05)

Damage from the "chemical spill". (taken 11/21/05)

One more chemo to go! (taken 11/21/05)

short take

I had my 10 day checkup and my bloodwork was all good. Other than that, we're building up to X-Mas so it's been the X-Mas Festival, work and shopping and decorating for the season. This is why I haven't been logging on. Just wanted to check in and say I'm still alive and going stronger and intend to catch up on what's been happening soon. Until then, hope you all are doing well and email me and let me know what you're up to. I do manage to respond to email sometimes, even when I get way behind on blogging.

The Last of Chemo

The day has come and gone. I've had my last chemotherapy treatment. It's been a week and you might expect I'd be so happy that I'd post right away and have some grand celebration. But things haven't really gone that way. Since it was the last, just for fun, this one hit me pretty good and right away. My stomach started cramping, not even waiting the usual day or two. The steroids made me particularly snippy and cranky so I was snapping at poor Luke and very short tempered about everything. Then it was Thanksgiving and then the "pain killer days" and then back to work and now I can tell my blood count is dropping because I'm soooo tired. Each day I've thought, I need to post about my completion of this phase of things, but each day I think, I just can't.

Today I'm going to try.

The day itself was like any other chemo day. It was a little surreal to look around at the other people having chemo and think I won't belong here anymore. I thought maybe there would be some acknowledgement by the nurses of the event. Of course, I go back to see the onc this Thursday for the 10 day post treatment blood sucking so while he did congratulate me on getting to the end of chemo, he's expecting to see me again soon. The nurse giving me my last treatment was the same who gave me the first. I said to her I thought it was apt that she be the one to do it for that reason. All she said to that was, "Oh, we're celebrating then?" I expected the other nurses might come by and congratulate me, but they didn't. I felt weird about that. I wanted balloons and whistles. I got a stomachache.

Of course, I wanted to bring them cookies or something and I forgot, so I guess I couldn't expect much if I couldn't manage any celebration myself.

Truthfully, I haven't wanted to celebrate because, just how do you celebrate in a way that doesn't involve food? I mean, food doesn't taste right, it's all metallic. Where's the fun in that? Also the poison is still coursing through my veins and I still feel weak and "off."

I'm elated not to have to have any more chemo. But in a muted sort of way. It's weird that the blasted chemo has even taken away my strength to feel joy at it being over.

Eventually I'll be able to jump up and down. For now I wave my arms slowly and lamely around and say, "wahoo." But everything is eventual with cancer. Eventually the tumor grows or shrinks. Slowly as the chemo is administered you eventually start to feel crappy, weak, pain. Eventually your hair falls out. Eventually you start to feel better, gain strength, until the next chemo, start again. Now that's it over, eventually my hair will grow back and food will taste right again (I hope) and my neuropathy will fade (I hope) and I'll get strong again.

My life will never be what it was before this happened, but maybe it will be as good. I will have paid a year (by the time radiation treatments are finished) to buy some life (though I can't know how much I've bought) with family and friends. Eventually I'll feel like celebrating.

The Dishwasher Arrives

The hurricane dishwasher came Saturday. It took us an hour or so on Saturday and all day Sunday to remove the old one and install the new one. Actually, removing the old one took most of that time. That was a bugger (excuse my outrageous language here)! We were worried there for a bit that the new one wouldn't go in, but it slid right in easily. It's beautiful! Very white. I told Luke that we'll have to paint the cabinets now.

Veteran's Day

I have the day off today. I know, I know, but if you want these days off like me you're gonna have to get a government job. That's all there is to it.

I feel really normal today. I spent the day writing all day. But no, not blogging. I did go back and read some of my old entries from the first several chemo treatments. Geez, that was harder than I remember. Good thing we forget pain, isn't it? I completely forgot how rough the first four treatments were. I was thinking it was mostly the taxol, but it wasn't. The adriamycin and cytoxin were pretty awful. I know this much, I hope I won't have to go through that again!

It's beautiful outside today. I'm sitting at my kitchen table with the windows open, still in my pjs. There's a nice breeze coming in and I'm doing my favorite thing - writing.

But alas, it's four o'clock in the afternoon. I better go shower now in case we want to go out to eat. Food tastes almost good today.

The good thing that happened: I'm alive and feeling fine.

Have you ever noticed that so much of what we say can be found in a song lyric somewhere?