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 29, 2005
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?
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.
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.
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!
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.
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.
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.
Wednesday, October 26, 2005
The Joy Never Ends
Okay, all kidding aside, this sucks! Apparently it's going to be my lot to experience every evil thing chemo has to offer. I hate to recite a bunch of complaints, but this one hasn't been so easy. When they injected the chemo (remember no more port) the vein in my forearm blew and the chemo leaked into my arm. This left a giant "burn" which irritated a nerve. The burn itself didn't (doesn't) hurt much worse than sunburn, but the nerve, HOLY SHIT, that hurts!
It wasn't immediate. It took a few days and of course, reached fruition on Saturday afternoon (Dancing Day in the morning, pain in the afternoon). I called the weekend number where a chipper girl answered and said, "Is this an emergency? Because I'm not supposed to get the doctor unless it's an emergency." I yelled at her. I said, "How the hell am I supposed to know if it's an emergency? Nothing like this has ever happened to me!" She got the doctor. I lost it with the poor doc on call, telling her that I just couldn't stand it anymore. You're given numbers to call and when you do you're made to feel like you shouldn't be bothering people. She wanted to know who made me feel that way and I told her.
Anyway that was the beginning of an exceptionally bad week. By Monday I had fever and they wanted me to come and see my onc. He felt bad but said there was nothing to do but wait it out and he gave me pain killers and told me to put heat on it. Then he sent me for a flu shot.
That night I woke up vomiting. My fever kept coming and going all week and I was unbelievably tired. Friday morning I woke up with 102.2 fever. They want you to go to the hospital if it's 100.1. At the hospital they took blood and did cultures. My hemoglobin had dropped from Monday. It was 8. I think it's supposed to be between 12 and 16. (I'm going to check that when I have time). This accounted for the headache and shortness of breath I'd been experiencing.
Anyway, they gave me two units of blood, but they couldn't find the blood designated for me by a friend naturally. Then they sent me home as my fever was down. I felt like crap all weekend and couldn't move. In fact I mostly slept through Monday. I did manage to get up and go to work yesterday and I'm about to go now.
My arm is peeling now and looks really gross. It alternates between numbness and pain. My mouth hurts, I have a sore on my tongue, and every time I take a deep breathe it sends searing pain through my throat/chest (I can't tell anymore where the pain is). I don't know how much more of this I can take.
It wasn't immediate. It took a few days and of course, reached fruition on Saturday afternoon (Dancing Day in the morning, pain in the afternoon). I called the weekend number where a chipper girl answered and said, "Is this an emergency? Because I'm not supposed to get the doctor unless it's an emergency." I yelled at her. I said, "How the hell am I supposed to know if it's an emergency? Nothing like this has ever happened to me!" She got the doctor. I lost it with the poor doc on call, telling her that I just couldn't stand it anymore. You're given numbers to call and when you do you're made to feel like you shouldn't be bothering people. She wanted to know who made me feel that way and I told her.
Anyway that was the beginning of an exceptionally bad week. By Monday I had fever and they wanted me to come and see my onc. He felt bad but said there was nothing to do but wait it out and he gave me pain killers and told me to put heat on it. Then he sent me for a flu shot.
That night I woke up vomiting. My fever kept coming and going all week and I was unbelievably tired. Friday morning I woke up with 102.2 fever. They want you to go to the hospital if it's 100.1. At the hospital they took blood and did cultures. My hemoglobin had dropped from Monday. It was 8. I think it's supposed to be between 12 and 16. (I'm going to check that when I have time). This accounted for the headache and shortness of breath I'd been experiencing.
Anyway, they gave me two units of blood, but they couldn't find the blood designated for me by a friend naturally. Then they sent me home as my fever was down. I felt like crap all weekend and couldn't move. In fact I mostly slept through Monday. I did manage to get up and go to work yesterday and I'm about to go now.
My arm is peeling now and looks really gross. It alternates between numbness and pain. My mouth hurts, I have a sore on my tongue, and every time I take a deep breathe it sends searing pain through my throat/chest (I can't tell anymore where the pain is). I don't know how much more of this I can take.
Saturday, October 15, 2005
Sleep Can Do the Trick
I slept really late this morning but I guess it was just the ticket for my mood. As I came out of my bedroom I heard the happy notes of Luke's guitar practice. I felt inspired to dance and shimmy around the room, bopping up and down in counterpoint to his playing. I am anti-rhythm woman (hear me roar), and the sight of me dancing steps in no relation to the speed or rhythm of the guitar playing is quite comical. Add my patchy head of hair and my giant sleeping shirt (designed to cover my extra flesh) and it's not a pretty sight. I don't care. Something I'm learning - when you feel good don't waste it, grab onto it.
Now everyone has left the house for various activities and I'm still feeling light, so I'm putting on the stereo to dance around and clean the house.
Now everyone has left the house for various activities and I'm still feeling light, so I'm putting on the stereo to dance around and clean the house.
Thursday, October 13, 2005
Hair Loss and Antidepressants
Took off half a day today. Trying not to over do it. I’m back to being tired again. That’s what poison does to you.
My hair started to fall out again last Saturday. It had been growing back and for a while it felt like my life and my appearance might be getting back to normal. It had grown enough that I stopped wearing hats everywhere. It was coming in dark, almost black and silver/gray, just like my sister Cheryl’s hair. My hair used to be a medium brown.
I wonder if it’ll grow in dark like this again or if I’ll get a new color. When that bunch of hair came loose in my fingers I didn’t handle it too well. I knew it would fall out again, but… This is hard. I had an early morning break down. But Luke was there and reminded why I’m doing all this.
I didn’t shave my head this time. My hair is really short anyway. It’s amazing how thick it is, though. It’s a real mess, especially in the shower where most of it comes out. Before I leave the house I run the dust buster over my head (oh yes I do) to catch the loose hairs and then pull on my hat.
A few people have suggested to me that maybe I should try antidepressants. First let me say I've tried them before and they definitely helped when I needed it. I'm not knocking them, but the truth is eventually they make me feel flat. Yes, the crying stops, but so does the laughing.
Here’s how I feel about it. This is the biggest event of my life. I own these emotions. I'm not going to be denied the feelings, no matter how hard they are, that come with it. I need to be able to lose it sometimes and I need to be able to laugh too and to curse the universe and to beg my ancestors to intervene, knowing it's fruitless, to feel despair and to have hope. I also need to feel calm and normal and know that’s real. Of course, having said all that, I know very well that things change and I may change my mind later, but for now - no antidepressants.
My hair started to fall out again last Saturday. It had been growing back and for a while it felt like my life and my appearance might be getting back to normal. It had grown enough that I stopped wearing hats everywhere. It was coming in dark, almost black and silver/gray, just like my sister Cheryl’s hair. My hair used to be a medium brown.
I wonder if it’ll grow in dark like this again or if I’ll get a new color. When that bunch of hair came loose in my fingers I didn’t handle it too well. I knew it would fall out again, but… This is hard. I had an early morning break down. But Luke was there and reminded why I’m doing all this.
I didn’t shave my head this time. My hair is really short anyway. It’s amazing how thick it is, though. It’s a real mess, especially in the shower where most of it comes out. Before I leave the house I run the dust buster over my head (oh yes I do) to catch the loose hairs and then pull on my hat.
A few people have suggested to me that maybe I should try antidepressants. First let me say I've tried them before and they definitely helped when I needed it. I'm not knocking them, but the truth is eventually they make me feel flat. Yes, the crying stops, but so does the laughing.
Here’s how I feel about it. This is the biggest event of my life. I own these emotions. I'm not going to be denied the feelings, no matter how hard they are, that come with it. I need to be able to lose it sometimes and I need to be able to laugh too and to curse the universe and to beg my ancestors to intervene, knowing it's fruitless, to feel despair and to have hope. I also need to feel calm and normal and know that’s real. Of course, having said all that, I know very well that things change and I may change my mind later, but for now - no antidepressants.
Tuesday, October 11, 2005
Eight Down and ...
two to go. What?? Another bit of info I haven't passed on yet. On the day we went for the seventh chemo (that was put off a week to let the onc and pharmacy work on getting approval for payment of avastin) the onc hit us with something he hadn't mentioned before. He said he thought I should have four more treatments, not two, so I'd have four taxotere consecutively and I'd be able to have more avastin before we stopped. His main reason he said was because, "even though we've been telling you all along how quickly your cancer has shrunk, it really didn't shrink as much as it should have after six chemo treatments." (I had six treatments before the surgery).
Take a minute to think about that.
My reaction was, did he lie to me before? I don't know. In my opinion he did, but does he think he did? I assume he was referring to the three positive lymph nodes, but I don't really know. I had seen him before this day when he knew the results of the surgery and he never mentioned two additional treatments. Here he was standing in front of Luke and me saying, well, we really didn't tell you the truth before. When he left the room I turned to Luke to check if I had heard what I thought I did. Luke's reaction was the same as mine.
I think the main problem with this onc is his bedside manner. Let me say I believe as an oncologist he is a good doctor. He's analytical and I think he really does pay attention to my particular case. He investigated this new drug and discussed with the pharmacist and checked the literature to see if weekly or bi-weekly treatments of taxotere would be easier for me to take than the larger doses every three weeks (it wouldn't). He did treat my nueropathy immediately. I have spoken to other women whose onc did not and as a result they still have trouble two years later. He has given me the meds I need to avoid nausea, another problem other women told me they were under medicated for. All these things add up.
However, he just doesn't understand my need to know what is going on with my illness. He wants me to come in and do what he says, no questions asked. I want to understand. And I don't like the surprises. It's just so frustrating!
No Pollyanna statements tonight. I'm having a total of ten treatments, instead of eight. I'll have to have radiation when that's all done. My hope of being finished by the end of the year is blown away. I won't be able to wrap it up in a box marked 2005 and put it behind me.
Take a minute to think about that.
My reaction was, did he lie to me before? I don't know. In my opinion he did, but does he think he did? I assume he was referring to the three positive lymph nodes, but I don't really know. I had seen him before this day when he knew the results of the surgery and he never mentioned two additional treatments. Here he was standing in front of Luke and me saying, well, we really didn't tell you the truth before. When he left the room I turned to Luke to check if I had heard what I thought I did. Luke's reaction was the same as mine.
I think the main problem with this onc is his bedside manner. Let me say I believe as an oncologist he is a good doctor. He's analytical and I think he really does pay attention to my particular case. He investigated this new drug and discussed with the pharmacist and checked the literature to see if weekly or bi-weekly treatments of taxotere would be easier for me to take than the larger doses every three weeks (it wouldn't). He did treat my nueropathy immediately. I have spoken to other women whose onc did not and as a result they still have trouble two years later. He has given me the meds I need to avoid nausea, another problem other women told me they were under medicated for. All these things add up.
However, he just doesn't understand my need to know what is going on with my illness. He wants me to come in and do what he says, no questions asked. I want to understand. And I don't like the surprises. It's just so frustrating!
No Pollyanna statements tonight. I'm having a total of ten treatments, instead of eight. I'll have to have radiation when that's all done. My hope of being finished by the end of the year is blown away. I won't be able to wrap it up in a box marked 2005 and put it behind me.
Sunday, October 09, 2005
Updates
When the first group from Katrina was still here I had an appointment with my oncologist. At that time he told me there is a chemo drug (avastin) used for colon cancer that has recently been found to be effective in preventing the recurrence of cancer in breast cancer patients such as myself that are not HER2 positive. This is good news as there really hasn't been an adjuvant therapy for us hormone negative gals. The catch? Not FDA approved for breast cancer, just yet. He told me to see if my insurance would pay and if not we'd have to decide what to do.
Long story short, insurance co. said no. We decided we'd have to pass and planned to have the taxotere as scheduled. When we showed up for the chemo, all pre-medicated, he said perhaps he could, with the assist of the hospital pharmacist, convince the insurance company to pay or short of that, get the pharmaceutical company to supply the drug. This is what is so frustrating about this doctor. While I appreciate the extra effort, why in the world does he let me pre-medicate, take off from work and drive to Shreveport thinking I'm going to have chemo and then tell me to wait and let him try to get approval? He couldn't have told me before this that he might be able to secure the drug?
And communication with him isn't getting any better. When, in an effort to clarify what he was saying, I repeated his suggestion that the insurance might pay after all, even though they had turned me down, he took my question as refusing the new treatment. I resisted the urge to yell at him and maybe pop him on the top of his little head, even though he was asking for it. I find myself taking deep breaths before speaking to him.
The good news is the pharmacist was able to convince the insurance company to approve payment for the new med by sending them the literature supporting use of avastin for breast cancer patients. Basically, if they pay for this drug now, maybe they won't have to pay for more treatment later.
Okay, so the following week I had the two treatments together. And tomorrow I'll have another one. I believe I already talked about my reaction to it and there's no reason to rehash that.
Long story short, insurance co. said no. We decided we'd have to pass and planned to have the taxotere as scheduled. When we showed up for the chemo, all pre-medicated, he said perhaps he could, with the assist of the hospital pharmacist, convince the insurance company to pay or short of that, get the pharmaceutical company to supply the drug. This is what is so frustrating about this doctor. While I appreciate the extra effort, why in the world does he let me pre-medicate, take off from work and drive to Shreveport thinking I'm going to have chemo and then tell me to wait and let him try to get approval? He couldn't have told me before this that he might be able to secure the drug?
And communication with him isn't getting any better. When, in an effort to clarify what he was saying, I repeated his suggestion that the insurance might pay after all, even though they had turned me down, he took my question as refusing the new treatment. I resisted the urge to yell at him and maybe pop him on the top of his little head, even though he was asking for it. I find myself taking deep breaths before speaking to him.
The good news is the pharmacist was able to convince the insurance company to approve payment for the new med by sending them the literature supporting use of avastin for breast cancer patients. Basically, if they pay for this drug now, maybe they won't have to pay for more treatment later.
Okay, so the following week I had the two treatments together. And tomorrow I'll have another one. I believe I already talked about my reaction to it and there's no reason to rehash that.
Friday, October 07, 2005
And time rolls on
It's been nearly a month since I last posted. I've been overwhelmed with people coming and going, school starting, getting back to work after surgery, doctors and chemotherapy and hurricanes.
All my evacuees have gone home now. Last time I wrote was the day before chemo was scheduled to resume. Well, it didn't happen that week. It was put off a week (long story I hope to get to this weekend). I had the chemo the following week and then we had our own hurricane. Some people in the surrounding area are still without electricity. We were lucky. We were only without electricity about 16 hours. That was about all I could stand of the heat, because it was the weekend after chemo, which is my worst time.
Fortunately, the "rest" I had since the last treatment did me good. Physically, I was much stronger when I had this one and my reaction to it wasn't too bad. It certainly was nothing like the last time. I had stomach cramping and gas (this is from a new chemo drug I hope to talk about this weekend) but only a day or two of mild pain compared with the four days of constant pain killers last time. I did have more numbness in my mouth, but my feet are no worse than they have been. I wonder if I'll always shuffle when I walk? I am very tired though. That's one reason I haven't made any posts. Very tired. This should be my strong week, (Monday I go back for the next treatment) but after work I'm drained.
Speaking of work, it's time to go, but first I must mention that we did locate my brother, Tom. He's fine and was worried about us.
Luke tells me it's cool outside today. Whahoo!
All my evacuees have gone home now. Last time I wrote was the day before chemo was scheduled to resume. Well, it didn't happen that week. It was put off a week (long story I hope to get to this weekend). I had the chemo the following week and then we had our own hurricane. Some people in the surrounding area are still without electricity. We were lucky. We were only without electricity about 16 hours. That was about all I could stand of the heat, because it was the weekend after chemo, which is my worst time.
Fortunately, the "rest" I had since the last treatment did me good. Physically, I was much stronger when I had this one and my reaction to it wasn't too bad. It certainly was nothing like the last time. I had stomach cramping and gas (this is from a new chemo drug I hope to talk about this weekend) but only a day or two of mild pain compared with the four days of constant pain killers last time. I did have more numbness in my mouth, but my feet are no worse than they have been. I wonder if I'll always shuffle when I walk? I am very tired though. That's one reason I haven't made any posts. Very tired. This should be my strong week, (Monday I go back for the next treatment) but after work I'm drained.
Speaking of work, it's time to go, but first I must mention that we did locate my brother, Tom. He's fine and was worried about us.
Luke tells me it's cool outside today. Whahoo!
Tuesday, September 27, 2005
Here's a pic of Rita's aftermath in our back yard. Luckily, it's not much to cry about. Our hearts go out to all those who had real life changing damages. Here's a link if you want to see more.
Monday, September 12, 2005
What, more chemo?
It's been such a busy time, as you might imagine, at my house with evacuaees coming and going. I barely read emails any more. Today I spent hours trying to locate my brother Tom, but still no luck.
My sisters have been home to Jefferson Parish to look at damage and collect some things for the long stretch it's been predicted they'll have to stay out.
Here's an update on my health. I finally returned to the surgeon August 31, when I had the first group of ten evacuees, but before my sister, niece and nephew came. I got good news there - the original pathology report was wrong. The margins around the tumor were negative, so he did get the whole tumor and I won't have to have any more surgery. On the other hand, there were three positive lymph nodes, which we knew already. For this reason he recommended I have the two chemo treatments I skipped. The oncologist naturally agreed.
Tomorrow I'll have chemo number seven. I'm hoping the final two treatments won't be so bad, now that I'm physically stronger. Of course, I won't be so strong by Friday, but whatayagonnado?
While at the surgeon's, he pulled the drain out of my side. He twisted the tubing and pulled out the drain which had a lip to keep it in, like a plug, and it hurt so bad I yelled, "Owwwch! You bastard!" He said, "What did she say?" And his nurse cracked up and said through giggles, "She called you a bastard!"
Here's my big Pollyanna comment: while it's devastating what people have suffered from Katrina, and what has happened to my family, with the rug yanked out from under them, we took Sunday to cook dinner for all that landed in the surrounding area and had a real Thanksgiving Dinner. Yes, we had turkey and stuffing and sweet potatoes, but mostly it was thanks-giving that our family made it out okay.
Is it any wonder where I get the silver lining attitude?
My sisters have been home to Jefferson Parish to look at damage and collect some things for the long stretch it's been predicted they'll have to stay out.
Here's an update on my health. I finally returned to the surgeon August 31, when I had the first group of ten evacuees, but before my sister, niece and nephew came. I got good news there - the original pathology report was wrong. The margins around the tumor were negative, so he did get the whole tumor and I won't have to have any more surgery. On the other hand, there were three positive lymph nodes, which we knew already. For this reason he recommended I have the two chemo treatments I skipped. The oncologist naturally agreed.
Tomorrow I'll have chemo number seven. I'm hoping the final two treatments won't be so bad, now that I'm physically stronger. Of course, I won't be so strong by Friday, but whatayagonnado?
While at the surgeon's, he pulled the drain out of my side. He twisted the tubing and pulled out the drain which had a lip to keep it in, like a plug, and it hurt so bad I yelled, "Owwwch! You bastard!" He said, "What did she say?" And his nurse cracked up and said through giggles, "She called you a bastard!"
Here's my big Pollyanna comment: while it's devastating what people have suffered from Katrina, and what has happened to my family, with the rug yanked out from under them, we took Sunday to cook dinner for all that landed in the surrounding area and had a real Thanksgiving Dinner. Yes, we had turkey and stuffing and sweet potatoes, but mostly it was thanks-giving that our family made it out okay.
Is it any wonder where I get the silver lining attitude?
Friday, September 02, 2005
Sharon is Safe
Just checking in to say Sharon got out of New Orleans and is safe and on her way to Natchitoches. I cannot express how happy I am that my family is safe. The only one missing now is Tom. I don't really know if he's missing or just hasn't called anyone because that's the way he is. I can't afford to expend a lot of energy worrying when he may not bother to check in. He was in Hattiesburg, which was flattened and we have no way of knowing if he left or stayed.
Now I'm waiting for Sharon, Brie and Gabe. Everyone has a story and I hope I have the time and opportunity to write about them.
Now I'm waiting for Sharon, Brie and Gabe. Everyone has a story and I hope I have the time and opportunity to write about them.
Thursday, September 01, 2005
The World has Turned Upside Down
As if dealing with cancer weren't enough, my entire family and friends have to face running from a hurricane and then the prospect of losing all they own. I'm sure everyone knows what is happening in New Orleans and the Gulf Coast. We were all completely unprepared for what has become a warzone. There are stories to tell and certainly this eclipses my health issues at the moment.
My family did decide to leave the area before the storm and everyone made it out safely, except one. We are still unable to have any communication with my sister, Sharon. She's an x-ray tech at the only open hospital on the West Bank side of the Mississippi river from New Orleans. I've been told that the hospital is locked down and under guard.
I've been too busy with evacuees and trying to get news of unaccounted family and friends to think about blogging. I had a house full of evacuees. Six adults and four children.
Any one who might check here that we haven't made contact with, please email and let us know you are all right. I am wondering about the fate of friends who have scattered to the winds.
My family did decide to leave the area before the storm and everyone made it out safely, except one. We are still unable to have any communication with my sister, Sharon. She's an x-ray tech at the only open hospital on the West Bank side of the Mississippi river from New Orleans. I've been told that the hospital is locked down and under guard.
I've been too busy with evacuees and trying to get news of unaccounted family and friends to think about blogging. I had a house full of evacuees. Six adults and four children.
Any one who might check here that we haven't made contact with, please email and let us know you are all right. I am wondering about the fate of friends who have scattered to the winds.
Sunday, August 28, 2005
Category 5
Saturday, I woke to news that the hurricane was a category 5. I tried calling my sister, Cheryl, who planned to stay and ride out the storm and beg her to leave. The lines were all busy and I couldn't get through. Then I called my niece, April, that lives in Many and together we decided to keep calling Cheryl and April's sister Lisa, who also was staying. I took Lisa thinking I'd convince her she needed to get her mother to safety. I was sure April would pull out all the stops and tell Cheryl she needed to leave so Lisa would and come visit her grandchildren.
Neither of us ever got a clear line and we were both sick with worry until we finally got a call from Lisa who said they were on the road and headed for Aprils'. I was much relieved. By the time they left the city the traffic was all being directed west so they had to drive a long way through Mississippi before they could go north and then east. April lives just a few miles from the Texas border so they had a long way to go in slow traffic. As they got further north and then turned east the storm and winds could be seen behind them. They couldn't stop because they didn't want it to catch up with them. I think it took them about 22 hours, but I'm not sure exactly.
My evacuees arrived in the afternoon. They were already on the north side of the lake when they left in the morning and didn't have too much trouble getting here. It was one of my oldest friends, Susan, her husband, Adam, their two kids, Susan's and Adam's mother, Adam's sister, Donna, her husband, Don, and their two kids. Sounds like a big burden, but they are self-sufficient house guests, especially with the two grandmothers there. With blow up beds and mattresses on the floor we managed to spread them around and found sleeping space for everyone.
Now we just wait to see what Katrina will do. It looks like it's going to be a long haul.
Neither of us ever got a clear line and we were both sick with worry until we finally got a call from Lisa who said they were on the road and headed for Aprils'. I was much relieved. By the time they left the city the traffic was all being directed west so they had to drive a long way through Mississippi before they could go north and then east. April lives just a few miles from the Texas border so they had a long way to go in slow traffic. As they got further north and then turned east the storm and winds could be seen behind them. They couldn't stop because they didn't want it to catch up with them. I think it took them about 22 hours, but I'm not sure exactly.
My evacuees arrived in the afternoon. They were already on the north side of the lake when they left in the morning and didn't have too much trouble getting here. It was one of my oldest friends, Susan, her husband, Adam, their two kids, Susan's and Adam's mother, Adam's sister, Donna, her husband, Don, and their two kids. Sounds like a big burden, but they are self-sufficient house guests, especially with the two grandmothers there. With blow up beds and mattresses on the floor we managed to spread them around and found sleeping space for everyone.
Now we just wait to see what Katrina will do. It looks like it's going to be a long haul.
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