Saturday, September 13, 2008

Sunday, December 03, 2006

Oh, I Forgot

Remember I mentioned the prickling/itching nerve-endings-firing thing I was having? Well it faded gradually and rarely ever happens now. Someone on the cancer group told me they had experienced this as well and it was caused by anemia. That would explain why it became less frequent until it has practically stopped all together after re-starting the aranesp shots and then upping my iron intake. I'm so glad it stopped in spite of the onc blowing me off when I told him about it.

Now, it's time to stop posting and concentrate on figuring out what to do about Christmas shopping.

What Else is New?

I got a glove and a sleeve for my swollen hand, but honestly, I think it makes it worse. I think the glove is too tight around the wrist and so it actually increases the swelling. The only time it works well is when I’m riding my bike. I think this is due to the pressure on my palm from gripping the handlebar.

In addition to the massage, the physical therapist began putting my hand in this sleeve/pump contraption for thirty minutes when I went for the therapy. It's kind of like a blood pressure cuff except it covers the whole arm including the hand. It has air chambers all the way up that fill with air in succession to squeeze the lymph from your hand up your arm into your torso. My problem is so chronic that I got one of these to use at home pretty much daily. It’s such a relief and my hand does seem to be getting better. Luke calls it Big Blue. I’ll get him to take a picture and post it and you’ll see why. I use this thing for about an hour a day. It's pretty quiet, considering, so I can watch TV or read while I'm pumping.

I’m still supposed to wrap my hand every other day or so. I can’t sleep in the bandages, though. It cuts off something and causes a sort of pain or discomfort or … well I don’t know the words to describe what it feels like. It’s a feeling that things are not quite right, as if my body is communicating that it’s dangerous to lay down with the bandages on my arm pinching … I don’t know what. I know that doesn’t exactly make sense, but if you felt this you’d understand.

We had our annual Christmas Festival yesterday. The weather finally turned cold, but not freezing, so it was perfect. The live music was great and the fireworks show was probably the best we've had in a number of years. They combined music and a light show with the fireworks. They’ve had music play with the fireworks before, but the sound system wasn't that great and it was never quite in sync. This year the sound was spectacular, the lights, the music and the fireworks were on the money. It had me laughing with delight through the whole show.

Changing Oncs

Okay, so I said was going to come back and talk about the difficulty in changing oncologists and didn’t. What can I say? In my defense… heck, I have no defense, I just haven’t gotten around to doing it yet. And life marches on.

Since so much time has gone by and the sting has faded I’ll give a condensed version of events. After my check-up with the original onc I was so disgusted (the man really had a way of casting dark clouds over an otherwise sunshiny day) I decided there was no way I could go back to him. Ever. If the cancer comes back I didn’t want to be in a position to have to have him treat me.

I got a list of recommendations from my gynecologist. She said I shouldn’t need a referral. I picked a woman from the list and had my primary care doc send a referral anyway. Then I called. The girl told me I would need a referral from the oncologist, that one from the gynecologist or my primary doc wouldn’t do. This was nuts, I thought, because why would my oncologist refer me to another oncologist? I explained this to the girl who insisted that was how it was done. I would need to have my records sent and a referral from the other onc.

I bet you can guess what happened next. Speaking with the old onc’s receptionist I was informed (in a “patients are so stupid” tone) that oncologists don’t refer patients to other oncologists. I asked her to send me a release for my records and ask the onc for the referral because I was changing oncs whatever it took. She said she’d tell him I wanted a second opinion.

Fast forward a week. Back on the phone with the potential onc (henceforth to be known as the PO)’s receptionist: The PO won’t agree to see me until she gets my medical records. Yes they got the referral from my primary care doc, but that wasn’t good enough, still waiting on the old onc.

More calls to old onc’s office and medical records dept. Assurances.

A week or two goes by. PO got the referral, but not the records. The old cancer center insists they sent those weeks ago. (Just a side note here. My primary doc told me when this started to call the cancer center, tell them when I’d be there to pick up my records, drive to Shreveport and get my records in person. Otherwise, she said, they’d play games and drag it out. She was prophetic.) One way or another I managed to get them resent (is that a word?).

Fast forward another week or so. The PO’s office now has the records. The girl tells me their procedure is this. They get the referral, they get the records, and then the onc group meets and discusses your case and decides whether they will see you or not.

Another week. The PO’s nurse calls and tells me the PO has agreed to see me, but only for a second opinion and not to take me as a new patient.

Yes, I nearly lost it. I take that back, I did lose it. I asked, didn’t the onc even look at my records? Because if she had and if anyone I spoke to on the phone had paid an ounce of attention they would know that I was finished with treatment and NED. I didn’t need a second opinion, I needed a new onc for follow-ups and in case the cancer came back!

She said, and this was horrifying to hear, NO onc is going to take a patient away from another onc. That I wouldn’t be able to change oncs unless I went to another city. What?! I told her I could not go back to the other onc. He made me feel hopeless. He didn’t listen to me. He didn’t respect me or my opinion concerning my own health. Something melted in her cold little heart because she said she’d give my records to the other oncs’ nurses (in that group) and see if any of them could get their oncs to agree to see me.

Enter Dr. V. A young onc that didn’t yet have a full patient load agreed to take me on. I made an appointment, which by this time, was right on schedule for my three month checkup. His nurse was a sweetheart and he had not yet lost the compassion that perhaps led him to this profession.

Funny thing though, my records had somehow gotten lost between the onc’s nurse that refused to see me and Dr. V’s nurse. They were quite happy to learn I could give them a complete history of my treatment including which chemos I had, the surgery date, the last date of treatment, the meds I took, the transfusions, everything, and all the kidney stuff too. Nurse Nancy (don’t you love that?) said I was a dream patient and Dr. V said, “Wow, you’re great! It’s such a relief to have a patient that knows the terminology and understands their treatment.” He said he recently had a patient come to see him that had had brain surgery, but didn’t know why. Hmmm…

I told him one big reason for changing oncs was that the old onc was so hard to get info out of and got annoyed when I asked questions, acting as if I was questioning his judgment every time I asked him to explain something. Dr. V assured me that he encouraged questions and I should feel free to ask anything as many times as I needed to because he preferred his patients to be fully informed.

He was also surprised I was still taking the aranasp shots every two weeks. I was still taking the shots because the last time I’d seen the old onc I was still anemic and I was tired all the time. The old onc said the chemo had advanced my kidney disease causing the anemia and I may have to have the shots indefinitely. Dr. V. did the blood tests and said I wasn’t anemic anymore. I told him I had had the shot about six days before the appointment, and that was probably the reason the blood work was good and I was concerned that my numbers (and energy) would drop in a week as the effects of the shot wore off. He apparently didn’t think it was a good idea to stay on the shot, though. He told me to try taking iron supplements instead, two a day rather than one. And to call him if that didn't work. Well he was right. I haven’t had any trouble and I just knew I would lose all energy and strength by the third week.

He gave me a bunch of stuff that would have been useful to have when this all began including a cookbook with a chart showing what was good to eat during different phases of the chemo cycle to keep up strength, counteract side-effects etc. This reminded me that when I asked my old onc for nutritional advice or assistance his response was, “You use the internet, don’t you?” Weak and tired, suffering from chemo-brain, I was going to sift through all the extraneous info on the internet cancer sites and compile a menu?

I think I’ll like this new onc.

At this point I know what you’re thinking. This is the short version?


Sunday, September 24, 2006

Can you believe it's September?

My hand has swollen from lymphedema. I cut myself and shortly thereafter it swelled. I elevated it as much as I could, but it wouldn't go down. The surgeon told me to just keep elevating. I asked him about therapy for it (something I had read about)and he waved that idea off and said we could try that later, just give it more time. I'm frustrated all over again with these doctors. They don't seem to care how any of this affects your life and you have to fight to find a way to improve your situation.

After another week I couldn't stand it anymore (it had been swollen for weeks and I was having difficulty typing) so I called the physical therapist at the radiation onc's office. She got an order from that onc and I've been driving to Alex two or three times a week for four or five weeks now for therapy and to have my hand/arm wrapped. It's looking a lot better and hopefully I'll get a sleeve/glove next week and won't have to wrap it anymore.

The wrapping looks like a burn wrap with gauze around my fingers and a bandage that goes around my hand and all the way up to my shoulder. You wouldn't believe how many perfect strangers ask what happened. It doesn't come off as rude, so much as honest open concern. Like they can't help it. As if they end the question with "you poor thing!"

But it is tiresome. I mean, do I really want to go into what the bandage is all about? I think some people that mention it don't so much want to know what happened, but feel obligated to ask. Like the waiter in the Mexican restaurant who waits on me several times a month. He knows my hand was fine last week so maybe he feels he's being rude if he doesn't ask.

One time about the third time that day someone said, "Oh, what happened to your hand?" I don't know what came over me. The look of concern (like I said, it looks like a horrible burn wrap) and horror on her face was too much and I blurted out, "This? It's nothing. It isn't real. It's a trick." And I waved my hand to show it wasn't hurt. The concern turned to confusion. Then I felt bad. All I could do was shrug and say, "long story."

Something terrible just happened. I've been posting for over an hour. I explained all the problems with changing oncologists and such and edited and oh, no! I hit spell check and somehow everything I typed after the above disappeared!

I can't retype it now, I have somewhere to be in twenty minutes and I still have to wrap my arm.

I'll try to remember it all and add it later. Bummer.

Tuesday, July 18, 2006

First three month checkup

I fooled around and didn't find a new onc so I had to go back to Dr. No-bedside-manner.

Good news is no signs of problems in the cancer department.

Bad news: creatinine is 1.8. Very depressing. And I'm pretty anemic. Onc says it's because my kidney's are getting worse. They aren't stimulating the bone marrow to produce red blood cells.

Well that explains why I'm still so tired, whether I sleep 6, 8 or 10 hours a night.

Now I have to have the aranesp shots every two weeks again.

Well that's life, isn't it?

Saturday, July 01, 2006

Life marches on!

I can't believe I forgot to post about my last doctor appointment and scans. The truth is when I finished treatment I didn't want anything more to do with anything cancer! Not even this blog.

Much time has passed, but I'll briefly fill in the details.

Had PET and CT scans. I am officially NED!! That's a good thing. It means no evidence of disease. I saw the onc and he gave me this wonderful news, told me to come back in three months and asked if I had any questions or problems. That's when I explained to him about the prickling/itching nerve-endings-firing thing I have now when I either get stressed or too hot. (Lord help me make through Louisiana summer - which is going to be all year round with the global warming that G.B. says doesn't exist). His response (a-hole) was, say it with me, "Chemo doesn't cause that." He said he gets that all the time if he wears too many sweaters, etc, blah, blah, blah. I told him it wasn't prickly heat, which is what he was implying, but he didn't believe me. "Yes, yes," he said, "That's happens to everyone."

"No," I said, "This isn't like that." But he doesn't listen. We were very close to raising our voices at each other. I simply have to find a new onc. On the day I should have been elated with the news I left his office frustrated. This cannot be good for my health.

I also saw my nephrologist. Good news there too. It looks like my creatinine is staying at about 1.4 which is a bit high for normal kidneys, but nothing to worry about it. It had gotten all the way up to 1.9 while on the chemo and there was some fear the chemo might do permanent damage. My cholesterol is still high, but I can't take the meds because it affects my liver function. Let's face it, I got a lemon for a body. I think the key to everything is going to be to lose weight.

The months have passed by. Jeremy graduated from high school, which nearly proved to be my undoing. THIS, not cancer treatment, is what caused me to need antidepressants. Can you believe it? He'll be going away to college in less than two months. I keep telling myself I should look forward to having that back room for myself, but I'm still quite anxious about the whole thing. I should have had more children! Or not!

I've gone back to 10 hr days/4 day weeks at work. They gave us Monday, July 3 off just because we have the 4th off. That gives me a 5 day weekend, Friday-Tuesday. Can't beat that!

Next Thursday it's time for my follow-up with the radiation oncologist. I'm going to ask him to recommend a new chemo onc to replace Dr. No-Bedside-Manner. I've got to pick one soon or go back to the old guy as July is my third month.

I think I'm shaking most of the chemo-brain problem. I'm able to think again and remember words and I haven't stuttered in a while. Judging by Luke's reactions I'd say my sense of humor is normalizing too. I tried to hang on to the humor while going through this, and I believe the experience of it would have been worse without it, but I did lose my quickness and some of my wit. Now I'm wise-cracking again and Luke is saying things like, "THAT'S my Dawn! I knew you'd come back!"

The good thing that happened today: They had soft pretzels for sale when we went for groceries this morning, which was good because we hadn't had any breakfast.

Things I want to do: I still want to sky dive and parasail. But most of all I want to get physical again and get back into shape.

Monday, March 20, 2006

Jay and Jeremy pour it on at the finish.

Dawn contributes her name to a "survival quilt".

Meeting 3

Meeting 2


Marie knows what to do when the national anthem is playing!

Puttin' on the bibs


Meeting of the minds

The Jeremy man

The Jay-man

Happy girl.

Hanging out

Dawn and the runners

Thursday, March 02, 2006

Happy Birthday to Me!

Last year I made a birthday wish... to be 42.

Today I got that wish.

Happy Birthday to me,
Happy birthday to me,
Happy birthday, dear me-ee,
Happy birthday to me!

I guess about 15 or 16 family and/or friends have told me they'd join me in Lafayette for the Race for a cure. I can't tell you how happy that makes me!

Tuesday, February 28, 2006


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.

Monday, February 27, 2006

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.

Saturday, February 18, 2006

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.

Tuesday, February 14, 2006

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

Tuesday, February 07, 2006

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.

Thursday, February 02, 2006

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!

Tuesday, January 31, 2006

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.

Thursday, January 26, 2006

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.

Monday, January 16, 2006

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.

Friday, January 13, 2006

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).

Monday, January 09, 2006

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

Monday, January 02, 2006

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.

Monday, December 19, 2005

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!!

Sunday, December 11, 2005

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.

Tuesday, November 29, 2005

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.

Tuesday, November 15, 2005

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.

Friday, November 11, 2005

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?

Thursday, November 10, 2005

Yet Another Doctor Appointment

Okay, things are going pretty good right now, but I'm wondering if there can be anything that goes smoothly without a hitch or does every aspect of this experience have to have some drama to it?

Monday I returned to the Cancer Treatment Center and had the dressing changed on the picc line. That went fast and easy, except that the area around the picc line was feeling sore. When the nurse removed the old dressing there was some bruising and swelling. She called another nurse over and they decided it was because the old dressing was on so tightly - they called it a pressure dressing (that was put on by the ultrasound tech when the picc line was inserted, I'm sure to keep it from bleeding.) Anyway, they felt it was okay and put another dressing on my arm and I went on my merry way.

As the days went by it didn't start feeling better, but worse. That brings me to today, my 10 days after chemo oncologist visit. The oncologist's nurse, Joan, decided (I don't know what happened to Mary, but wherever she is, she can stay there- Joan is a million times better and nicer and on the ball!) to change the dressing again and replace the plastic tape with clothe. It feels a lot better when I move my arm around! Then the onc gave me an antibiotic because my arm is actually a little red, swollen and warm. If it doesn't get better in a few days or gets worse I have to go back and have an ultrasound to make sure there isn't a clot, of all things.

Besides all that, though, things are going well. I'm feeling pretty good, if tired easily (when I am not these days?) and my blood counts were actually good this time. In fact, this particular cycle I'm doing better than I have after any of the treatments. The onc even joked that we seem to have fixed my kidneys as my creatinine is better than it has been since I started. I secretly suspect that part of it is knowing that the chemo is almost over. With only one treatment left I'm anticipating how I'm going to feel when they stop pumping poison through my body.

Somehow I managed to get the onc to talk about what happens after my next (AND LAST) chemo. He said he planned to discuss that the next time (remember he has his plan of how it all should go, but I haven't had the courtesy of following the plan very well). But he relented and answered my questions today.

My questions involved any further diagnostic tests and such. I mean, how do I know there isn't anything left in my neck? The surgeon couldn't remove that lymph node when he took all the rest. And one of the CT reports mentioned possible mets on the chest wall. (The onc said the radiologist was "wishy-washy" about whether there was anything there or not). Long story short, after radiation he and the radiation onc will get together and discuss it. I'll probably have some CT scans to establish a base line to go by in case I ever start having symptoms of recurrence. Remember, the tests can't pick up everything - only mets big enough to see. Then I'll be on a schedule of seeing the onc every three months for probably the next three years then maybe just every four months for I don't know how long after that, assuming I don't develop any more cancer in the meantime. This will fit right in to my doc filled lifestyle as I already have blood work every three months and visit the nephrologist every six months for my PKD. Some people (they must be sick) like seeing doctors all the time. I don't. I hate it.

The good thing that happened: I went to Dillards and the nice lady there helped me find a bra with pockets and inserts that I can wear to balance out my breast asymmetry. Now if I want to look even, I can.

Sunday, November 06, 2005

Lazy Sunday

Hey folks! Just hanging around Sunday afternoon taking it easy. This week hasn't been so bad. I guess the extra blood really helped. I took half days from work on Thursday and Friday, just to be sure not to over do it. Yesterday, being the Saturday after chemo, was my worst with pain in my back (like electrical shocks running up and down my spine) but I took the pain meds and soon was singing and happy.

My biggest challenge for now is keeping the dressing for the pic line dry when I shower or bathe. I wrap my arm in that Glad press and seal wrap. It works really well. I recommend it if you ever need to keep a limb dry. The only trouble is it does stick to your skin, so pulling it off is like pulling off a really big bandaid. A little ouchy.

The great thing that happened (boy am I glad to write that, been a little gloomy lately) is that our evacuees from the hurricane have bought us a dishwasher to thank us for taking them in! Imagine that! Now I'm sure they know that we were just happy to have a house they could come to and besides, they thanked us plenty while they were here! It was totally unnecessary, but quite thoughtful of them and I thank them for the unexpected gift. I'm also happy they've been able to return to their homes and are getting things back to normal slowly but surely.

Tuesday, November 01, 2005

Monday, October 31, 2005

Nine Down and One to Go

I went to chemo with the holiday spirit donning my pirate/gypsy costume (it was questionable). Got a few laughs. Had the picc line put in first. The actual procedure didn't take too long. Once they brought me in. The technician said the hold up was waiting for the nurses to do the paper work. I can believe it because Luke and I were waiting close enough to hear them discuss a fundraiser raffle for some time and various other non-work related topics when they were supposed to be entering my info in the computer. Finally the tech came and asked if the paper work was done and said he was taking me anyway.

The procedure is done under a local anesthetic using the ultrasound machine to guide the catheter through my vein and up into my heart. Now I'll have a tube coming out of my arm for the next three weeks. But that's not so long. I have to go back each Monday so they can flush it out and make sure I don't get any clots.

Then we saw the onc. My labs were much better. He said not to be surprised if I needed to have another blood transfusion as this chemo seems to make me really anemic. He doesn't want to stop, though, because I have "such advanced cancer."

When I went for the chemo it all went well with the picc line. I met a woman there from Harvey who was displaced by Katrina. She has ovarian cancer and has really had the problems with chemo. Starting with 9 months of chemo treatment only to learn that not only was her cancer not responding to the treatment, but she actually had a new tumor grow in her spleen. All this while she had a lot of nausea and allergic reactions to the treatment. I felt way ahead of the game after talking to her.

Only time will tell how it'll go this time. Maybe it won't be so bad. I asked the onc before if there was something I should be eating or doing (besides the aranasp shot) to deal with the anemia. He said, no not really.

With my costume today I wore three special things around my neck. One was a "pearl" necklace that was my mother's. She died when I was 16 so it was sort of a plea to my ancestors to help me out and give me strength. The second was a St. Peregrine Medal, the patron saint of cancer patients. This was a gift from a friend. And the last was a medicine bag with three pebbles in it with the words, "peace," "love" and "believe" written on them. This was a gift from my sister, Sharon. It was a kind of pay it forward thing as it was originally a gift from her friend in New Mexico to her when she was going through a bad time. When she got it there were only two pebbles, but she added the "believe" one when she gave it to me.

I was ready for Trick-or-Treaters tonight and wouldn't you know after many weeks of no rain the sky opened up with hard rain and lightening and thunder. I don't know what to do with this candy!

Pirate Dreams

Happy Halloween!! My favorite holiday.

On my way to chemo 9 dressed as a pirate. Hope to at least get a laugh from the nurses. I wish I had a theme song for the day, but none comes to mind just yet.

"Everything is gonna be alright" - that's part of a song, isn't it? Can't quite grab onto it but I'll think of it later.

Gotta go.

Sunday, October 30, 2005

Feeling Better, Just in Time

I'm better now. My arm is still somewhat numb, but it doesn't hurt too much. I still get tired easily, but am willing to have a little fun and am managing to squeeze out a joke or two around the house.

Chemo tomorrow. It's also Halloween. I'm thinking I might dress up as a pirate to go to chemo. I'll have to go to x-ray first for them to put in the pick line I'll have for this chemo and the next. Something else to live with for the next three weeks. But as a pirate I could add a little levity, at least while I'm awake. I fall asleep after they give me the benadryl.

I don't know if I mentioned when my right hand swelled (an after effect of the surgery). I had a big hand and small hand for a while (they've evened out some). Incidentally, the right boob is at least a cup size or two smaller than the other. I guess the big hand balanced out the small boob on my right side. Now that the hand has shrunk I'm off balance. I have to find out where to get an insert for my bra so I don't look so lopsided.

Only two chemos left. I can do this! I just hope there're no more surprises.