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!!
Monday, December 19, 2005
Wednesday, December 14, 2005
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.
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?
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.
Saturday, August 27, 2005
Luke and Jeremy "hit the road".
Alright I'm guilty. I can't resist horning in on Dawn's blog and throwing on a few pics here of me and the boy having fun at the James Burton Guitar Festival trade show.
James Burton Guitar Festival
James Burton Guitar Festival
Still Draining After All These Weeks
On Wednesday we made a return trip to the surgeon. The appointment was a disappointment and a waste of time. The infection is clearing up nicely (which I could have told him over the phone) but I’m still getting too much drainage to lose the drain. I’m tempted to name the thing.
The surgeon hadn’t looked at the slides from the lumpectomy yet, so he couldn’t advise us on whether I should have more surgery. He’s going to talk to the pathologist and fax my info to the radiation oncologist then discuss it with both of them. It may be that the radiation will be enough. If I have more surgery it has to be done now and not after the radiation treatment, because the radiated area won’t heal well. I also have another appointment with the chemo oncologist on Wednesday. I’m afraid he’s going to suggest we do the last two chemo treatments that we skipped. I don’t want to do it, quite honestly, but it may be necessary.
I have a brand new problem that started last week. My joints are very stiff and painful if I’ve been sitting or lying down. I have great difficulty standing up and walking if I’m been resting. It’s as if I’m trying to move my legs and feet in directions they aren’t made to go. Curiously, if I move around a lot and do things I can “work” it off and feel okay only to become nearly crippled again if I sit down. And never in my life have I experienced so much difficulty and pain getting up from sitting on the floor. Again I feel like I’m 80 not 41. I don’t know what this is from. I don’t think the docs have a clue. I think it may be that I take too many meds and they are interacting in naughty ways.
The good thing that happened: Luke and I finished a filing project we started last week. Let’s just say it was a major project, but I’m really pleased with the end result.
The interesting thing that’s about to happen: Hurricane Katrina is headed to New Orleans and we’re expecting a couple of carloads of refugees tomorrow. However, most of my family is staying there to ride out the storm, unless they make evacuation mandatory. Then I guess we’ll have a few more carloads of guests. I’m worried about them and the whole city.
The surgeon hadn’t looked at the slides from the lumpectomy yet, so he couldn’t advise us on whether I should have more surgery. He’s going to talk to the pathologist and fax my info to the radiation oncologist then discuss it with both of them. It may be that the radiation will be enough. If I have more surgery it has to be done now and not after the radiation treatment, because the radiated area won’t heal well. I also have another appointment with the chemo oncologist on Wednesday. I’m afraid he’s going to suggest we do the last two chemo treatments that we skipped. I don’t want to do it, quite honestly, but it may be necessary.
I have a brand new problem that started last week. My joints are very stiff and painful if I’ve been sitting or lying down. I have great difficulty standing up and walking if I’m been resting. It’s as if I’m trying to move my legs and feet in directions they aren’t made to go. Curiously, if I move around a lot and do things I can “work” it off and feel okay only to become nearly crippled again if I sit down. And never in my life have I experienced so much difficulty and pain getting up from sitting on the floor. Again I feel like I’m 80 not 41. I don’t know what this is from. I don’t think the docs have a clue. I think it may be that I take too many meds and they are interacting in naughty ways.
The good thing that happened: Luke and I finished a filing project we started last week. Let’s just say it was a major project, but I’m really pleased with the end result.
The interesting thing that’s about to happen: Hurricane Katrina is headed to New Orleans and we’re expecting a couple of carloads of refugees tomorrow. However, most of my family is staying there to ride out the storm, unless they make evacuation mandatory. Then I guess we’ll have a few more carloads of guests. I’m worried about them and the whole city.
Tuesday, August 23, 2005
Drainage Issues and Other Stuff
I notice I’ve mentioned pain a number of times. I don’t want you to get the wrong idea. It’s not terrible pain. I’m not writhing around wishing to end it all just to stop the pain. In fact I only took the pain meds once or twice a day and I haven’t needed it at all in the last day or so. I just complain about the pain because it’s with you all the time and prevents you from doing things. On the other hand, I’ve had a lot more use of my arm much quicker than I expected and if it weren’t for the drain sticking out of my side I’d be almost normal.
I know what’ll be fun. I’ll tell you how I deal with the drain. I’ve explained the tubing coming out of my side and the bulb at the end of it. Well, the tubing is kind of long, about 2 ½ feet, with the bulb at the end hanging down and swinging in the wind. Of course, allowing it to hang is unpleasant so you must contain it. At home I have a bathrobe tie that I tie around my waist and hang the bulb from. (The bulb has a loop on it). When I leave the house I stuff the bulb in my pocket with all the tubing and wear a shirt long enough to cover it. You see what I mean about inconvenient? And I’m sure I’ve told you way more than you care to know.
The good thing that happened: Last night our AC stopped blowing cool air.(No that wasn't the good thing that happened.) By coincidence I had called an AC service the day before to come this morning to clean my compressor and check the Freon, etc. Better yet, they came when scheduled! To put this in perspective one of my neighbors waited weeks for service with no AC a few months back. I don’t know why it took so long, but I’m thankful we didn’t have to wait any time at all.
I know what’ll be fun. I’ll tell you how I deal with the drain. I’ve explained the tubing coming out of my side and the bulb at the end of it. Well, the tubing is kind of long, about 2 ½ feet, with the bulb at the end hanging down and swinging in the wind. Of course, allowing it to hang is unpleasant so you must contain it. At home I have a bathrobe tie that I tie around my waist and hang the bulb from. (The bulb has a loop on it). When I leave the house I stuff the bulb in my pocket with all the tubing and wear a shirt long enough to cover it. You see what I mean about inconvenient? And I’m sure I’ve told you way more than you care to know.
The good thing that happened: Last night our AC stopped blowing cool air.(No that wasn't the good thing that happened.) By coincidence I had called an AC service the day before to come this morning to clean my compressor and check the Freon, etc. Better yet, they came when scheduled! To put this in perspective one of my neighbors waited weeks for service with no AC a few months back. I don’t know why it took so long, but I’m thankful we didn’t have to wait any time at all.
Monday, August 22, 2005
What I Did On My Days Off
I've been home and off work for two weeks now and haven't managed to do anything that I thought I might. At first, of course, the problem was energy and pain. Too little of one and too much of the other. The pain meds did take care of the pain, but they render you too sleepy to do much. I was proud to do some laundry and wash dishes. Two days of trips to doctors and another day at the local hospital for blood work and the biweekly shot also suck up the days. Everything takes more time and energy than it should.
Here’s what I imagined myself doing on my time off: refinishing or painting furniture, sewing dresses for my nieces’ little girls, making mosaic tabletops, pottery, decoupage, designing an awesome backyard garden, writing, writing, writing…
I love doing creative things with my hands. I love the feeling of being lost in the project. You get fully immersed in what you’re doing. Like a spiritual experience. When you finish it’s like a release. And each time you look at it you get a little of that feeling back.
But now that I have a little energy, instead of doing those things I feel I need to get things in order and purge things I’ve been carrying around for years. I started with one box and then decided to tackle the files as we have stuff that’s at least ten years old in there. (Tell me, why do we keep pay stubs?) This file purging is turning out to be more than one day’s project!
Naturally I’m blogging rather than getting back in that room with my stacks; save, throw away, refile the misfiled papers, shred, don’t know what to do with.
I think I’d better go.
Here’s what I imagined myself doing on my time off: refinishing or painting furniture, sewing dresses for my nieces’ little girls, making mosaic tabletops, pottery, decoupage, designing an awesome backyard garden, writing, writing, writing…
I love doing creative things with my hands. I love the feeling of being lost in the project. You get fully immersed in what you’re doing. Like a spiritual experience. When you finish it’s like a release. And each time you look at it you get a little of that feeling back.
But now that I have a little energy, instead of doing those things I feel I need to get things in order and purge things I’ve been carrying around for years. I started with one box and then decided to tackle the files as we have stuff that’s at least ten years old in there. (Tell me, why do we keep pay stubs?) This file purging is turning out to be more than one day’s project!
Naturally I’m blogging rather than getting back in that room with my stacks; save, throw away, refile the misfiled papers, shred, don’t know what to do with.
I think I’d better go.
Sunday, August 21, 2005
A Little Seriousness
Oh my, totally forgot the blog. Update: oh yes, the dang drainage thang is infected. I've been taking antibiotics for it for a few days and it looks much better. Unfortunately the drain isn't coming out until next week due to the infection.
While at the surgeon’s office I asked him what we should do about the positive margins indicated by the pathology report. He said he wanted to look at the slides himself before advising us on what to do. Our choices are what you’d expect; another lumpectomy, a mastectomy or possibly the radiation might take care of it. Then he said something he’s said before, but I didn’t put on the blog.
He said, “You understand that we aren’t going for a cure? That as advanced as your cancer was … it has already left the breast and eliminating it in the breast (or removing the breast) won’t stop it.” I didn’t put this on the blog before because I just couldn’t type the words. His point in telling me this was to explain that a mastectomy would not rid me of the cancer as cancer cells have already left the breast. It would be locking the barn after the horse has been stolen. In my case a lumpectomy should be as effective as a mastectomy and the less trauma the better, because, “we can’t cure it. It’s already out.”
Because of this conversation I felt very down a few days ago and did some more web surfing and research on breast cancer, particularly Stage IIIC. I even called the American Cancer Society information line. He couldn’t really tell me any more than I already know (he was reading from a fact sheet, I think), except one thing he told me which I think is important. The stats they have on survival percentages are based (first) on all women with the disease, whatever treatment they had (or didn’t have) and (second) on data collected up to ten years ago. Anyway, I had a little break down and wallowed in self-pity for a while. I find it helps to do this now and again, when no one is around. Let it all out in a big cathartic emotional tantrum and then get on with life.
I want to believe the chemo took care of any cancer cells that made it out of the breast. In fact, it stays in your system and continues for work for a while even as you are recovering. I still get sharp pains (like pinches) in my breast that I started getting after the chemo treatments began. These pains, I believe, are cancer cells dying. I may yet have more chemo because the oncologist wants to do another CT scan before deciding for sure not to do the final two treatments. The radiation I have will be directed not only at my breast, but also at my neck (where I had a positive node).
I haven’t yet asked for a prognosis and I probably won’t until I’m well into the radiation treatment. As my sister-in-law, Marie, told me, “Don’t borrow trouble.” I feel like it’s going away and that's all that matters.
While at the surgeon’s office I asked him what we should do about the positive margins indicated by the pathology report. He said he wanted to look at the slides himself before advising us on what to do. Our choices are what you’d expect; another lumpectomy, a mastectomy or possibly the radiation might take care of it. Then he said something he’s said before, but I didn’t put on the blog.
He said, “You understand that we aren’t going for a cure? That as advanced as your cancer was … it has already left the breast and eliminating it in the breast (or removing the breast) won’t stop it.” I didn’t put this on the blog before because I just couldn’t type the words. His point in telling me this was to explain that a mastectomy would not rid me of the cancer as cancer cells have already left the breast. It would be locking the barn after the horse has been stolen. In my case a lumpectomy should be as effective as a mastectomy and the less trauma the better, because, “we can’t cure it. It’s already out.”
Because of this conversation I felt very down a few days ago and did some more web surfing and research on breast cancer, particularly Stage IIIC. I even called the American Cancer Society information line. He couldn’t really tell me any more than I already know (he was reading from a fact sheet, I think), except one thing he told me which I think is important. The stats they have on survival percentages are based (first) on all women with the disease, whatever treatment they had (or didn’t have) and (second) on data collected up to ten years ago. Anyway, I had a little break down and wallowed in self-pity for a while. I find it helps to do this now and again, when no one is around. Let it all out in a big cathartic emotional tantrum and then get on with life.
I want to believe the chemo took care of any cancer cells that made it out of the breast. In fact, it stays in your system and continues for work for a while even as you are recovering. I still get sharp pains (like pinches) in my breast that I started getting after the chemo treatments began. These pains, I believe, are cancer cells dying. I may yet have more chemo because the oncologist wants to do another CT scan before deciding for sure not to do the final two treatments. The radiation I have will be directed not only at my breast, but also at my neck (where I had a positive node).
I haven’t yet asked for a prognosis and I probably won’t until I’m well into the radiation treatment. As my sister-in-law, Marie, told me, “Don’t borrow trouble.” I feel like it’s going away and that's all that matters.
Tuesday, August 16, 2005
At Home with Healing Thoughts
The days are moving along. My arm still hurts but not as urgently. I can go much longer through the day without resorting to pain meds. In fact I feel like I probably won't need any today.
On Sunday I discovered that a sport bra that latches in front and is two sizes too big is just the ticket. I can have a little support and the elastic doesn't squeeze the drainage tube. This means I can leave the house, without shame. I was beginning to get a little of the housebound crazies, if you know what I mean. Since coming home from the hospital I've only left the house twice(other than to pace around the yard for the few minutes I could stand the blazing heat). Once to go visit at my mother-in-law's house and once to have dinner at my sister-in-law's house.
Since getting the bigger bra idea I've been to Walmart, the doc's office (local PCP) and the post office. Today I'm going to venture to the bank. Life is good again.
Or so I thought. The area around the drainage tube has started to swell and turn red. The wire stitches that were on the outside are now inside. My breast is tender to the touch, in an OUCH sort of way. I fear I may have made an error with the bra.
I've tried calling the surgeon's office, but they're all at lunch until 1:30. Hurry up and wait. I sure hope I don't have to go to his office (in Shreveport). Maybe I can have my primary care doc look at it instead. She's just around the corner. Funny thing is that yesterday when I saw her for the fluid retention (did I mention the extra 10 lbs I'm carrying around from fluid retention?) the dang thing was fine. I even had her look at it to be sure. Twenty-four hours later I'm getting worried about infection.
Ooops, spoke too soon. Just talked to Sherry, have to go to Shreveport tomorrow to let the surgeon see my swelling. Oh well, at least I'll get out of the house, right?
The good thing that happened: I received, in the mail, something for my Cancer Days (see how people care) Box. Was it a card? Well, yes I got one of those too, but this is something else. A letter? No. An autographed picture? No. Give up? Of course you do because this is something no one would imagine sending. My oldest (and dearest, he'll insist I add) friend in the whole world, Clint, actually sent me a braid of his hair. A big braid too, not just a few strands! Isn't that hilarious? And so thoughtful! After all what do I need, but hair?
For those of you going, huh? I'll explain. Clint had long and thick hair which he regularly grows and then cuts off and donates to Locks of Love. He did this long before I got cancer. This time, however, his hair was so long and thick they braided it in four braids to cut for donation. Only he saved one, which arrived in my mailbox yesterday. Thank you, Clint, and I'm relieved it isn't dead fish!
On Sunday I discovered that a sport bra that latches in front and is two sizes too big is just the ticket. I can have a little support and the elastic doesn't squeeze the drainage tube. This means I can leave the house, without shame. I was beginning to get a little of the housebound crazies, if you know what I mean. Since coming home from the hospital I've only left the house twice(other than to pace around the yard for the few minutes I could stand the blazing heat). Once to go visit at my mother-in-law's house and once to have dinner at my sister-in-law's house.
Since getting the bigger bra idea I've been to Walmart, the doc's office (local PCP) and the post office. Today I'm going to venture to the bank. Life is good again.
Or so I thought. The area around the drainage tube has started to swell and turn red. The wire stitches that were on the outside are now inside. My breast is tender to the touch, in an OUCH sort of way. I fear I may have made an error with the bra.
I've tried calling the surgeon's office, but they're all at lunch until 1:30. Hurry up and wait. I sure hope I don't have to go to his office (in Shreveport). Maybe I can have my primary care doc look at it instead. She's just around the corner. Funny thing is that yesterday when I saw her for the fluid retention (did I mention the extra 10 lbs I'm carrying around from fluid retention?) the dang thing was fine. I even had her look at it to be sure. Twenty-four hours later I'm getting worried about infection.
Ooops, spoke too soon. Just talked to Sherry, have to go to Shreveport tomorrow to let the surgeon see my swelling. Oh well, at least I'll get out of the house, right?
The good thing that happened: I received, in the mail, something for my Cancer Days (see how people care) Box. Was it a card? Well, yes I got one of those too, but this is something else. A letter? No. An autographed picture? No. Give up? Of course you do because this is something no one would imagine sending. My oldest (and dearest, he'll insist I add) friend in the whole world, Clint, actually sent me a braid of his hair. A big braid too, not just a few strands! Isn't that hilarious? And so thoughtful! After all what do I need, but hair?
For those of you going, huh? I'll explain. Clint had long and thick hair which he regularly grows and then cuts off and donates to Locks of Love. He did this long before I got cancer. This time, however, his hair was so long and thick they braided it in four braids to cut for donation. Only he saved one, which arrived in my mailbox yesterday. Thank you, Clint, and I'm relieved it isn't dead fish!
Monday, August 15, 2005
Saturday, August 13, 2005
A Week and A Day
It's Saturday now. I'm thinking more clearly. And since I'm thinking clearly I'd thought I'd take this opportunity to whine a little. I know, I know, so unlike me.
The drain site is raw and it hurts! But Luke puts Neosporin with pain relief around the opening and it helps. Wanna hear about the drain? Come on, you know you do! The drain is tubing, like IV tubing, that sticks out of a hole in the side of my breast under my arm. At the other end of the tubing is a bulb sort of like what's used to pump up a blood pressure cuff - only clear. It has a plug on it that you open to empty the fluid. Then you squeeze the bulb and plug it again creating a vacuum that pulls the fluid out (of my breast). The tubing is anchored in my breast by wire stitches. When I move my arm around the skin around my breast is pulled. Look in the mirror and move your arm around and you'll see what I mean. Can't see it? Are you naked from the waist up? Take off your shirt and bra, ninny, and you'll get it. Anyway, this movement pulls the tubing in and out (of me) and the stitches rub and that's what causes the rawness. Also, sometimes it leaks and gets the skin wet, which adds to the soreness. Disgusted yet?
My right breast appears to be a little smaller than the left, but not a bunch. Actually it always has been, but now it seems more obvious. I doubt it will be noticeable at all with a bra on, though. And speaking of that, I can't say I ever thought I'd miss wearing a bra (especially since I'm one of those women that sheds hers the minute she walks in the door of her house after work), but, because I can't wear one (the drain comes out at the exact spot the elastic from a bra should be) I really miss it!
Then there’s my arm trouble. The underside of my right arm alternates between sharp pain and sore numbness. The stand-in surgeon who released me from the hospital said this surgery can damage the nerves there and the numbness can be permanent, but I'm thinking the sharp pains are signals that the nerves are waking up. We didn't get any instructions on how much or little I should use that arm except one nurse said I would probably be happier if I used it as much as possible. Luckily, I can use it a lot more than I expected and don't have to do EVERYTHING with my left arm.
Yesterday was our 10th wedding anniversary. Luke’s and mine! That makes today the beginning of decade number two. Nice of me to do the math for ya and state the obvious, eh?
I heard a great line on a TV program the other day. "My father always used to say, it'll all be okay in the end. So if it's not okay, it's not the end!" There you go, it's not the end.
The drain site is raw and it hurts! But Luke puts Neosporin with pain relief around the opening and it helps. Wanna hear about the drain? Come on, you know you do! The drain is tubing, like IV tubing, that sticks out of a hole in the side of my breast under my arm. At the other end of the tubing is a bulb sort of like what's used to pump up a blood pressure cuff - only clear. It has a plug on it that you open to empty the fluid. Then you squeeze the bulb and plug it again creating a vacuum that pulls the fluid out (of my breast). The tubing is anchored in my breast by wire stitches. When I move my arm around the skin around my breast is pulled. Look in the mirror and move your arm around and you'll see what I mean. Can't see it? Are you naked from the waist up? Take off your shirt and bra, ninny, and you'll get it. Anyway, this movement pulls the tubing in and out (of me) and the stitches rub and that's what causes the rawness. Also, sometimes it leaks and gets the skin wet, which adds to the soreness. Disgusted yet?
My right breast appears to be a little smaller than the left, but not a bunch. Actually it always has been, but now it seems more obvious. I doubt it will be noticeable at all with a bra on, though. And speaking of that, I can't say I ever thought I'd miss wearing a bra (especially since I'm one of those women that sheds hers the minute she walks in the door of her house after work), but, because I can't wear one (the drain comes out at the exact spot the elastic from a bra should be) I really miss it!
Then there’s my arm trouble. The underside of my right arm alternates between sharp pain and sore numbness. The stand-in surgeon who released me from the hospital said this surgery can damage the nerves there and the numbness can be permanent, but I'm thinking the sharp pains are signals that the nerves are waking up. We didn't get any instructions on how much or little I should use that arm except one nurse said I would probably be happier if I used it as much as possible. Luckily, I can use it a lot more than I expected and don't have to do EVERYTHING with my left arm.
Yesterday was our 10th wedding anniversary. Luke’s and mine! That makes today the beginning of decade number two. Nice of me to do the math for ya and state the obvious, eh?
I heard a great line on a TV program the other day. "My father always used to say, it'll all be okay in the end. So if it's not okay, it's not the end!" There you go, it's not the end.
Thursday, August 11, 2005
Post-surgery Days
Crawling from the chair I've been poured into since I came home....
First day back, good day. Actually did some laundry and cleaned the kitchen. Then bad days. Just a haze. One day spent on the phone. That was good, except I had pain and took pain meds and felt like crap and slept and couldn't eat and still felt like crap. I managed to lay in the bed on my side for a few hours last night. The drain in my side is right in the way and I'm afraid of pulling it accidentally. I know I'm not making much sense, but it's how I feel. They told me (the sources I have who have been here before) that this part was the easy part. They lied. Or maybe they meant radiation. That's Phase III. We're still in Phase II - surgery. Phase I was chemo.
I do remember this. Yesterday the surgeon called with the pathology report. It wasn't good. Three out of twenty-three nodes were positive. To quote the surgeon, "That's very good considering the size of the thing." Yes, but what of the margins? Positive. That's bad. It means he didn't get it all. He said he may have to go in again. Or, I don't know. He said he had to look at the slides himself and we'd talk about it when I went back in to see him, when the current incision stops draining so much. From the looks of things, that could take a while.
There's a volcano on Maui that people drive up early in the morning before the sun rises. Then everyone rides down at dawn on yellow bicycles. It's a beautiful thing to see and someday, I will do it myself.
First day back, good day. Actually did some laundry and cleaned the kitchen. Then bad days. Just a haze. One day spent on the phone. That was good, except I had pain and took pain meds and felt like crap and slept and couldn't eat and still felt like crap. I managed to lay in the bed on my side for a few hours last night. The drain in my side is right in the way and I'm afraid of pulling it accidentally. I know I'm not making much sense, but it's how I feel. They told me (the sources I have who have been here before) that this part was the easy part. They lied. Or maybe they meant radiation. That's Phase III. We're still in Phase II - surgery. Phase I was chemo.
I do remember this. Yesterday the surgeon called with the pathology report. It wasn't good. Three out of twenty-three nodes were positive. To quote the surgeon, "That's very good considering the size of the thing." Yes, but what of the margins? Positive. That's bad. It means he didn't get it all. He said he may have to go in again. Or, I don't know. He said he had to look at the slides himself and we'd talk about it when I went back in to see him, when the current incision stops draining so much. From the looks of things, that could take a while.
There's a volcano on Maui that people drive up early in the morning before the sun rises. Then everyone rides down at dawn on yellow bicycles. It's a beautiful thing to see and someday, I will do it myself.
Monday, August 08, 2005
Cancer Days Box
On my last post I asked people to send me a letter or a card, if they are so inclined, to add to my "Cancer Days" box. Then someone asked on a comment what a "Cancer Days" Box was. I guess it was a little confusing. I'm talking about a Keepsake box, a box of memories, like you keep letters in a shoe box or whatever. For example, I have a "baby box" with stuff relating to Jeremy's birth. Since I found out about the cancer some people have sent me get well cards or little gifts. (I have a post card from my sister that she sent from Egypt.) At first I didn't think I'd want to save the cards, because I thought I wouldn't want to be reminded of this year of cancer. But actually, the cards remind me that I have friends, old and new, which is something I do want to remember. I hope that clears things up.
So, as I said, if you are so inclined, please send me a card, funny or serious, or a letter or a note or a blank sheet of paper with your signature on it, or anything that will remind me of you that I can put in my box of "good" memories from my "bad" "Cancer Days."
If you need my address than email me directly. You can get my email address by clicking on my name at the top of the page under "contributors."
That's about all I can write tonight. Tomorrow I'll tell you about the surgery. Today I'll just say it all went well and I'm feeling better than I expected to.
So, as I said, if you are so inclined, please send me a card, funny or serious, or a letter or a note or a blank sheet of paper with your signature on it, or anything that will remind me of you that I can put in my box of "good" memories from my "bad" "Cancer Days."
If you need my address than email me directly. You can get my email address by clicking on my name at the top of the page under "contributors."
That's about all I can write tonight. Tomorrow I'll tell you about the surgery. Today I'll just say it all went well and I'm feeling better than I expected to.
Friday, August 05, 2005
Surgery Day
No time left to blog. Thought I'd have time to remember what I had put down and lost, but people and work keep you busy. I mostly didn't get a chance to call anyone either.
Oh well, off to the hospital. I may not be able to type for a while.
Wish me luck!
Oh well, off to the hospital. I may not be able to type for a while.
Wish me luck!
Wednesday, August 03, 2005
DAMN
I just spent 45 minutes making a post and the damn thing is gone! I've lost it. Now I have to go to work and can't even try to recover it. Sometimes I hate modern technology. I just don't know what happen.
Oh well, maybe I'll remember some of what I had to say when I get home from work, tired and brain dead. Hmmm, not likely. Well, I'll try again later anyway. Should have saved it as I went along.
Oh if you're so inclined, send me cards and letters for my "Cancer Days" box.
Oh well, maybe I'll remember some of what I had to say when I get home from work, tired and brain dead. Hmmm, not likely. Well, I'll try again later anyway. Should have saved it as I went along.
Oh if you're so inclined, send me cards and letters for my "Cancer Days" box.
Countdown to Phase Two
I'm calling the lumpectomy and everything involved with it "Phase Two." Chemo was Phase One and the radiation treatment will be Phase Three.
I thought it would be a calm week leading up to the surgery. A time to contemplate my life and be introspective while waiting for the beginning of Phase Two. Yea, right! Would you believe I've had to go to the doctor or run to Shreveport everyday this week? Will it never end? (I think this is becoming my mantra.)
I'm going to the doctor, my PCP, in town because my legs are swelling and I'm retaining water. I'm taking something for it and I'm hoping it goes away by today or she's going to call the surgeon and tell on me.
And I've been working trying to get things in order for the poor souls that may have to handle some things while I'm out. I'll be out of work at least two weeks.
I planned to call a few people this week but have been exhausted by the time I get home. Maybe today.
I guess Phase Two has actually begun because I've seen the surgeon, had a mammogram and set the date. Yesterday I went to Shreveport for pretests. I think I passed. They took urine to do a pregnancy test (they never believe you know you're not preggers). They took blood, did an EKG and a chest X-ray. It took forever to give the nurse the info about medicines and health history (that one's getting ridiculous). The poor woman kept saying, "Oh no! You poor thing!"
Then she said, "Your parents must be frantic." I had to tell her they were both deceased. And she said, "Dawn, no! When did that happen?"
"I was 16 when my mom passed (kidneys) and 24 when my dad went (heart)."
"No, no, no!" Then she asked if I had any siblings. At this point I started laughing and told her about my family and Chrissy. I had to explain to her that I wasn't heartless and I grieve for everyone but it just seemed so ridiculous that each question she asked led to another tragic answer.
Then she asked if my hair was growing back and could she see it. So I took off my hat and showed her my baby orangutang look. She said, "Awww." She was sweet and laughed at my stupid jokes. The whole time she was asking questions she was typing. She even asked how my husband was handling all this and if he was alright. I don't know why the computer needed this info, but she put it all in there.
The good thing that happened: I bought new shoes!
Places I want to go: Devil's Island, Lake Superior at Apostle Islands National Lakeshore, Wisconsin
I thought it would be a calm week leading up to the surgery. A time to contemplate my life and be introspective while waiting for the beginning of Phase Two. Yea, right! Would you believe I've had to go to the doctor or run to Shreveport everyday this week? Will it never end? (I think this is becoming my mantra.)
I'm going to the doctor, my PCP, in town because my legs are swelling and I'm retaining water. I'm taking something for it and I'm hoping it goes away by today or she's going to call the surgeon and tell on me.
And I've been working trying to get things in order for the poor souls that may have to handle some things while I'm out. I'll be out of work at least two weeks.
I planned to call a few people this week but have been exhausted by the time I get home. Maybe today.
I guess Phase Two has actually begun because I've seen the surgeon, had a mammogram and set the date. Yesterday I went to Shreveport for pretests. I think I passed. They took urine to do a pregnancy test (they never believe you know you're not preggers). They took blood, did an EKG and a chest X-ray. It took forever to give the nurse the info about medicines and health history (that one's getting ridiculous). The poor woman kept saying, "Oh no! You poor thing!"
Then she said, "Your parents must be frantic." I had to tell her they were both deceased. And she said, "Dawn, no! When did that happen?"
"I was 16 when my mom passed (kidneys) and 24 when my dad went (heart)."
"No, no, no!" Then she asked if I had any siblings. At this point I started laughing and told her about my family and Chrissy. I had to explain to her that I wasn't heartless and I grieve for everyone but it just seemed so ridiculous that each question she asked led to another tragic answer.
Then she asked if my hair was growing back and could she see it. So I took off my hat and showed her my baby orangutang look. She said, "Awww." She was sweet and laughed at my stupid jokes. The whole time she was asking questions she was typing. She even asked how my husband was handling all this and if he was alright. I don't know why the computer needed this info, but she put it all in there.
The good thing that happened: I bought new shoes!
Places I want to go: Devil's Island, Lake Superior at Apostle Islands National Lakeshore, Wisconsin
Tuesday, August 02, 2005
Wednesday, July 27, 2005
Surgery Scheduled
I'm having the lumpectomy on Friday, Aug. 5. I don't know anything else. I'm waiting for the surgeon to call to answer my growing list of questions. I think he told me at the last appt that I'd be in the hospital two days.
Now that it's scheduled I'm starting to get scared. Before, I put aside worrying until I knew whether it would be a lumpectomy or mastectomy. But after the phone call I suddenly had a tightening in my gut. I'm afraid of anesthesia and staph infections. I know two people who died in different hospitals from staph infections after surgeries that went well.
The good thing that happened: For the last three nights I've slept all night straight through. Lately, I've had a terrible time with insomnia. Even when I take tylenol pm or benedryl. I finally feel rested.
Now that it's scheduled I'm starting to get scared. Before, I put aside worrying until I knew whether it would be a lumpectomy or mastectomy. But after the phone call I suddenly had a tightening in my gut. I'm afraid of anesthesia and staph infections. I know two people who died in different hospitals from staph infections after surgeries that went well.
The good thing that happened: For the last three nights I've slept all night straight through. Lately, I've had a terrible time with insomnia. Even when I take tylenol pm or benedryl. I finally feel rested.
Saturday, July 23, 2005
Funny Thing
I forgot all about this, but I just have to share it.
When Luke and I went to Dallas we were in a mall and he got in a line to buy us smoothies while I waited by the escalator. I was wearing a purple shirt with a purple pin on my hat, as you see in the picture Luke posted previously.
As I stood there I hear this man say, "Hey, pretty in purple!"
I look up and this middle-aged man is going up the escalator, but he's looking right at me.
Then he says, "How ya doin'?" Like he's Joey Triviani or something.
I just shook my head and turned away, but I thought, how hilarious. I look at my absolute worst in my entire life and this guy is making a pass at me. I wondered what his reaction would be if he got close enough to see the woman he's trying to flirt with is bald and eyebrowless and eyelashless.
I guess I've still got it. At least at a distance...
When Luke and I went to Dallas we were in a mall and he got in a line to buy us smoothies while I waited by the escalator. I was wearing a purple shirt with a purple pin on my hat, as you see in the picture Luke posted previously.
As I stood there I hear this man say, "Hey, pretty in purple!"
I look up and this middle-aged man is going up the escalator, but he's looking right at me.
Then he says, "How ya doin'?" Like he's Joey Triviani or something.
I just shook my head and turned away, but I thought, how hilarious. I look at my absolute worst in my entire life and this guy is making a pass at me. I wondered what his reaction would be if he got close enough to see the woman he's trying to flirt with is bald and eyebrowless and eyelashless.
I guess I've still got it. At least at a distance...
Friends Visit
Old friends, Wanda and Vicki, are here to visit for the weekend. It's unlikely I'll do any blogging this weekend.
I haven't heard from the surgeon yet and don't know when the surgery will be. I hope I'll have at least a week. My sister Cheryl and her daughter Lisa are coming this way to see her other daughter, April, and the new baby. I'd like to be able to visit with them too.
The good thing that happened yesterday: I got a really sweet note from my niece, Cait, and a picture of her beautiful family. Hope to see that adorable baby girl in person soon.
I haven't heard from the surgeon yet and don't know when the surgery will be. I hope I'll have at least a week. My sister Cheryl and her daughter Lisa are coming this way to see her other daughter, April, and the new baby. I'd like to be able to visit with them too.
The good thing that happened yesterday: I got a really sweet note from my niece, Cait, and a picture of her beautiful family. Hope to see that adorable baby girl in person soon.
Friday, July 22, 2005
And the Answer is...
They did a mammogram and then an ultrasound, just like before. After the ultrasound was done the radiologist came in the room and said, in an accent I couldn't quite identify (German maybe?), "Well it has shrunk considerably since the last time you were here! It's more than two-thirds smaller."
"Can he see it well enough to do a lumpectomy?"
"Oh yes, Dr. Marler will have no trouble, using either mammogram or ultrasound."
I think she said it was 11.1mm. I was surprised she told me anything, but I had told both technicians I was hoping to find out there was enough left of the lump to do a lumpectomy. It was actually bigger than I expected, but maybe that'll mean "clear margins" and there won't be the question of whether he gets all of it. That was the main argument by the onc on why I should have a mastectomy.
Now I wait for the surgeon's office to call to find out if he agrees with the radiologist and when the surgery will happen.
I've been looking in the mirror when I get out of the shower and I laugh every time at the fuzz/hair sticking up on my head. I finally realized why it looks so funny. Have you ever seen a baby orangutang?
"Can he see it well enough to do a lumpectomy?"
"Oh yes, Dr. Marler will have no trouble, using either mammogram or ultrasound."
I think she said it was 11.1mm. I was surprised she told me anything, but I had told both technicians I was hoping to find out there was enough left of the lump to do a lumpectomy. It was actually bigger than I expected, but maybe that'll mean "clear margins" and there won't be the question of whether he gets all of it. That was the main argument by the onc on why I should have a mastectomy.
Now I wait for the surgeon's office to call to find out if he agrees with the radiologist and when the surgery will happen.
I've been looking in the mirror when I get out of the shower and I laugh every time at the fuzz/hair sticking up on my head. I finally realized why it looks so funny. Have you ever seen a baby orangutang?
Thursday, July 21, 2005
Mammogram Day
Boob squishing today. I'm hoping to get the tech to tell me if she sees anything on the mammogram, but I know she won't. They never tell you anything. I'll just have to wait to get the call from the surgeon's office after they get the report.
I'm feeling a lot more like myself these last few days. I'm starting to talk like myself, walk like myself (well, not really with the balloon feet and all), and look like... hmm, actually I look pretty funny with the fuzz/hair sticking straight up on my head. It's getting longer, but not long enough to lay down yet. And it's pretty thin and wispy, but more is growing everyday. It's soft like baby hair.
Oops! Look at the time! Gotta go.
I'm feeling a lot more like myself these last few days. I'm starting to talk like myself, walk like myself (well, not really with the balloon feet and all), and look like... hmm, actually I look pretty funny with the fuzz/hair sticking straight up on my head. It's getting longer, but not long enough to lay down yet. And it's pretty thin and wispy, but more is growing everyday. It's soft like baby hair.
Oops! Look at the time! Gotta go.
Wednesday, July 20, 2005
Surgeon Update
Luke and I took a weekend getaway to Dallas. We stayed at a nice hotel where the staff treats you like royalty. And I think I had the most expensive meal of my life. The kind where presentation is as important as the food.
Monday we saw the surgeon. He said he'd do a lumpectomy if he could see it on the mammogram. I have that scheduled for Thursday so, as weird as it seems, say a prayer or cross your fingers that they find something on the mammogram. Otherwise, I'll have to have a mastectomy of the right breast.
If I have the lumpectomy I'll have radiation which means a new doctor, a radiation oncologist. I'll go every day for six weeks. But a mastectomy and reconstruction takes months. I truly want to be done with all this by the end of the year. Of course, technically I won't be done for years, but I mean all the treatment.
My left foot swelled yesterday and this morning it's still a little plump. At this point I'm not really sure which doctor to call now that the oncologist has cut me loose. I think I'll call the nephrologist.
Time for breakfast and work now.
Monday we saw the surgeon. He said he'd do a lumpectomy if he could see it on the mammogram. I have that scheduled for Thursday so, as weird as it seems, say a prayer or cross your fingers that they find something on the mammogram. Otherwise, I'll have to have a mastectomy of the right breast.
If I have the lumpectomy I'll have radiation which means a new doctor, a radiation oncologist. I'll go every day for six weeks. But a mastectomy and reconstruction takes months. I truly want to be done with all this by the end of the year. Of course, technically I won't be done for years, but I mean all the treatment.
My left foot swelled yesterday and this morning it's still a little plump. At this point I'm not really sure which doctor to call now that the oncologist has cut me loose. I think I'll call the nephrologist.
Time for breakfast and work now.
Tuesday, July 19, 2005
Wednesday, July 13, 2005
Tuesday, July 12, 2005
Long Story Short
I know I said I'd finish the story, but I just don't feel like it. So instead of telling the whole story, I'll cut to the chase. At the onc visit we decided the benefits of the chemo weren't worth the side effects. We decided to stop the chemo treatments now and not do the final two. Trust me on this one, there's no way this onc would suggest we stop here if he didn't really think my reaction to the chemo was extreme. I'm so relieved he suggested it (and I didn't have to), because I was beginning to feel like there was no way I was getting out of this short of being crippled. But I think the neurontin is helping. I still can't stay on my feet for long, but it does seem to be improving a little every day.
I go to the surgeon on Monday to decide what we do from here. By this I mean how extensive the surgery will be.
Oh yea, btw, the onc sent me to ultrasound to be sure I didn't have a blood clot (I don't) causing the pain around the port. Still don't know why I'm having pain around the port.
And have I mentioned that I have white fuzz growing all over my head? It feels kind of cool. And I can feel the wind blow through the fuzz on my neck. On the other hand, I also have it growing along my jawline, like I'm some kind of simian creature. My friends insist you can't notice it unless the light hits it just right. And other post-chemo patients have assured me that it does go away.
The good thing that happened today: My niece, April, had her second baby. This one's a girl. And if that wasn't good enough, April happens to be my godchild. And if that wasn't good enough, she had the baby here in Natchtitoches, (because she doesn't live too terribly far away) so I'm able to see her and visit her and the baby.
I go to the surgeon on Monday to decide what we do from here. By this I mean how extensive the surgery will be.
Oh yea, btw, the onc sent me to ultrasound to be sure I didn't have a blood clot (I don't) causing the pain around the port. Still don't know why I'm having pain around the port.
And have I mentioned that I have white fuzz growing all over my head? It feels kind of cool. And I can feel the wind blow through the fuzz on my neck. On the other hand, I also have it growing along my jawline, like I'm some kind of simian creature. My friends insist you can't notice it unless the light hits it just right. And other post-chemo patients have assured me that it does go away.
The good thing that happened today: My niece, April, had her second baby. This one's a girl. And if that wasn't good enough, April happens to be my godchild. And if that wasn't good enough, she had the baby here in Natchtitoches, (because she doesn't live too terribly far away) so I'm able to see her and visit her and the baby.
Monday, July 11, 2005
Taxotere -number six
I went in for the taxotere treatment not knowing what to expect this time. But I was determined (as I am with every treatment) that I would be the one to have no side effects and to take the chemo with a smile, ever strong and unflappable. Okay, so my record hasn’t been perfect, but it was a new day and a new chemo and I had caused enough trouble already.
The onc apologized again for our miscommunication problem. My blood levels were better than they have been, but not good enough to stop the aranasp shots. Then he did the breast exam and, as I have already mentioned, he found no lumps. Except the ones that were supposed to be there, hehe.
The treatment itself was pretty easy. They gave me benedryl in the drip first thing and I was so cool I fell asleep immediately. They started the taxotere while I slept and I woke up with only about ten minutes left to go. Instead of the dignified and witty image I sought to portray, I was groggy and confused. I thought they had just started the taxotere, but really it was all over.
The rest of the day, except for the sleepiness, I felt fine. No queasiness or anything. But on the third day...
It was the same as with the taxol: My feet, which had started to feel better with the neurontin, where numb again. And I had sharp pains everywhere. The pain didn't seem as bad as before, though. I’m not sure if that’s because it really wasn’t as bad, or because I wasn’t taken by surprise like the last time or because I already had the hydrocodone ready.
After a few days though, I was once again sick and tired of being in zombie-land on the hydrocodone. I kept trying to make it without it, but by evening I had to take the painkillers. Then I started having pain around the port and down my left arm and around my left collarbone.
I called the cancer center to ask if all this was normal stuff and make sure I was taking the neurontin correctly since he increased my dosage. The nurse focused right in on the pain around the port and said I had to come in.
Didn’t mean for this to be a cliffhanger, but suddenly I’m tired. And that doc visit changed everything, so it’s a story unto itself. I’ll try to finish the story tomorrow after work. Tune in next time for the continuing saga.
The onc apologized again for our miscommunication problem. My blood levels were better than they have been, but not good enough to stop the aranasp shots. Then he did the breast exam and, as I have already mentioned, he found no lumps. Except the ones that were supposed to be there, hehe.
The treatment itself was pretty easy. They gave me benedryl in the drip first thing and I was so cool I fell asleep immediately. They started the taxotere while I slept and I woke up with only about ten minutes left to go. Instead of the dignified and witty image I sought to portray, I was groggy and confused. I thought they had just started the taxotere, but really it was all over.
The rest of the day, except for the sleepiness, I felt fine. No queasiness or anything. But on the third day...
It was the same as with the taxol: My feet, which had started to feel better with the neurontin, where numb again. And I had sharp pains everywhere. The pain didn't seem as bad as before, though. I’m not sure if that’s because it really wasn’t as bad, or because I wasn’t taken by surprise like the last time or because I already had the hydrocodone ready.
After a few days though, I was once again sick and tired of being in zombie-land on the hydrocodone. I kept trying to make it without it, but by evening I had to take the painkillers. Then I started having pain around the port and down my left arm and around my left collarbone.
I called the cancer center to ask if all this was normal stuff and make sure I was taking the neurontin correctly since he increased my dosage. The nurse focused right in on the pain around the port and said I had to come in.
Didn’t mean for this to be a cliffhanger, but suddenly I’m tired. And that doc visit changed everything, so it’s a story unto itself. I’ll try to finish the story tomorrow after work. Tune in next time for the continuing saga.
Visitors
The good thing that happened:
The weekend before the taxotere treatment was scheduled my brother, Larry, his wife, Marie and my sister, Sharon came to visit. They picked a great weekend to come since I had had two weeks to recover from the taxol. On Saturday my niece, April, joined us and brought her 20 month old, Hunter. He is such a delightful baby and I had the best time playing with him all day.
We did some Natchitoches things: the Green Market, the Mercantile, a plantation tour. Larry brought some trout and his burner and fried fish for us Saturday evening. It was a good visit and really lifted my spirits.
We also discovered a new campground suitable for Larry and Marie to park their camper. The campground has a lake and cabins and a beach. We're hoping to rent a couple cabins and have a whole family gathering when the weather cools a bit.
The weekend before the taxotere treatment was scheduled my brother, Larry, his wife, Marie and my sister, Sharon came to visit. They picked a great weekend to come since I had had two weeks to recover from the taxol. On Saturday my niece, April, joined us and brought her 20 month old, Hunter. He is such a delightful baby and I had the best time playing with him all day.
We did some Natchitoches things: the Green Market, the Mercantile, a plantation tour. Larry brought some trout and his burner and fried fish for us Saturday evening. It was a good visit and really lifted my spirits.
We also discovered a new campground suitable for Larry and Marie to park their camper. The campground has a lake and cabins and a beach. We're hoping to rent a couple cabins and have a whole family gathering when the weather cools a bit.
Sunday, July 10, 2005
What I Should Be Doing With My Time
I’ve wondered, and I bet most of you have too, from time to time, what I would do if I found out I had a fatal disease. I’ve daydreamed about what I would do if I learned I only had, say, six months to live. Come on, you know you have too! You can’t help it. We’re besieged with popular wisdom: live today as if it were your last, carpe diem and all that jazz. Get out there and experience life!
Awhile back I promised to tell you about some of the emotional crap that comes along with dealing with cancer and that’s what I’m getting at here. It seems I’ve moved from shock to acceptance to anger to shame and disappointment in myself for not doing those things I’ve always thought I would if faced with the knowledge that death may be coming sooner than expected. Frustration is another good word for what I feel. I’ve always thought I really would seize the day and do crazy things and leave letters behind or video recordings with important messages about life and death and love and hope.
The problem with this romantic notion is, of course, that doing most things takes time, money and energy. All three of which are in short supply when you find yourself facing down a life-threatening illness. Most of your time, money and energy are spent trying to ensure that the illness doesn’t ultimately turn out to be fatal.
Then it becomes an emotional dilemma. You know you should be out there ‘seizing the day,’ but really all you want to do is curl up in your chair with a big fluffy blanket and stare zombie-like at the TV while your loved ones bring you ice cream bars and glasses of water. This leads to guilt: I’m going to die and my last days are going to be my most boring. And all my loved ones are going to wonder why I didn’t write them meaningful and humorous letters about how they made my life wonderful. After all, I had plenty of time sitting around recuperating from treatments.
The truth is I really want to write those letters. And I really want to drag my weary body outside to smell the roses. But when I think about it, I think, it’s a million degrees outside, I’ve smelled roses and I don’t think their smell has changed, and I can’t take the smell with me, so what’s the point?
As for the letters, well once you start you have two problems. First, you have to admit to yourself that you might actually die, which is so ridiculous, because in all your life experience it’s been other people who die, not you. Okay I recognize this is in no way logical, but nonetheless… Then of course, if you get beyond that and really admit you could die, then you are so overcome with sadness for the people who count on you that you just can’t bear to do anything. Except you cry and cry and cry until you are totally drained and even more exhausted and can’t feel anything. Who can write meaningful and humorous letters when they can’t feel anything? So you eat an ice cream bar and pull your blanket around you more snuggly and pick up the remote.
The other problem is that once you start writing letters you discover that you can’t possibly write a letter to EVERYONE and what if you leave someone really important out and they forever wonder why you didn’t care enough about them to write them a letter, but you wrote a letter to so-and-so who you barely knew.
Before this all began, in my daydreams about what I’d do if ever I found myself in this particular situation (in addition to seizing the day and writing letters to loved ones) I’ve often wondered to whom I would write the letter that starts, “you probably don’t remember but….” Who would I get in touch with to let them know they made a difference to me in some small way they may not even be aware of? You know that friend who tricked you into reading your first novel (I double dare you to read just one chapter) and turned you into a reader (where are you now Carrie Comeaux?) or the teacher who really reached you. Because there are some people, including one or two teachers, who did a small thing for me that actually changed the course of my life for the better. Shouldn’t they know? I mean wouldn’t you get a charge out of finding out something you did, but have long since forgotten, had a positive influence on someone’s life? I know what you’re thinking. Why not just tell them? Why would you need to be dying to write a letter like that? And to that I say to you, heck I don’t know. Embarrassed to bring it up after all these years?
And so here we are, four and half months after diagnosis, and I still haven’t written a single letter. I still haven’t gone out and done some crazy thing I’ve always wanted to do but never got around to. The hard truth about cancer is that you may know that death is possible and you should prepare just in case. And you may know what you’d like to say to whom, but the drugs you take to dull the pain also dull the mind. On your bad days you’re weak and exhausted in which case you stay home, zombie-like in your chair. On your good days you work because, if you live through this, you can’t afford to lose your job. However, when the workday is done you have nothing left to give to writing letters or anything else. And then there’s this thing no one warned me about called “chemo brain” that makes it hard to form a cohesive thought sometimes. That’s why, to my surprise, I’ve had a hard time keeping up with the blog.
Now you know. But what I’ve described above isn’t something I think about or worry about every day. That’s how emotion is, one day you are up and another you are down. I’m not having too much trouble writing today after all.
The good news is I no longer feel like I’m going to die. My prognosis at the beginning was somewhere between 16% and 49% survival. I give this range because my diagnosis was Stage IIIC which none of the charts show because apparently it wasn’t a separate stage until 2003. Before that the stages went from IIIB to IV. Therefore the charts show survival rates for IIIB as 49% and for IV as 16%. I thought I’d seen a chart somewhere in the beginning that showed 36% survival for IIIC, but I can’t seem to find it now. At any rate, these are not good numbers. However, my cancer has shrunk rapidly and at my last treatment (which I’ll tell you about later) the onc could no longer feel any lumps at all. I’ll repeat that, much to the visible delight of my onc, he couldn’t feel ANY lumps at all.
Awhile back I promised to tell you about some of the emotional crap that comes along with dealing with cancer and that’s what I’m getting at here. It seems I’ve moved from shock to acceptance to anger to shame and disappointment in myself for not doing those things I’ve always thought I would if faced with the knowledge that death may be coming sooner than expected. Frustration is another good word for what I feel. I’ve always thought I really would seize the day and do crazy things and leave letters behind or video recordings with important messages about life and death and love and hope.
The problem with this romantic notion is, of course, that doing most things takes time, money and energy. All three of which are in short supply when you find yourself facing down a life-threatening illness. Most of your time, money and energy are spent trying to ensure that the illness doesn’t ultimately turn out to be fatal.
Then it becomes an emotional dilemma. You know you should be out there ‘seizing the day,’ but really all you want to do is curl up in your chair with a big fluffy blanket and stare zombie-like at the TV while your loved ones bring you ice cream bars and glasses of water. This leads to guilt: I’m going to die and my last days are going to be my most boring. And all my loved ones are going to wonder why I didn’t write them meaningful and humorous letters about how they made my life wonderful. After all, I had plenty of time sitting around recuperating from treatments.
The truth is I really want to write those letters. And I really want to drag my weary body outside to smell the roses. But when I think about it, I think, it’s a million degrees outside, I’ve smelled roses and I don’t think their smell has changed, and I can’t take the smell with me, so what’s the point?
As for the letters, well once you start you have two problems. First, you have to admit to yourself that you might actually die, which is so ridiculous, because in all your life experience it’s been other people who die, not you. Okay I recognize this is in no way logical, but nonetheless… Then of course, if you get beyond that and really admit you could die, then you are so overcome with sadness for the people who count on you that you just can’t bear to do anything. Except you cry and cry and cry until you are totally drained and even more exhausted and can’t feel anything. Who can write meaningful and humorous letters when they can’t feel anything? So you eat an ice cream bar and pull your blanket around you more snuggly and pick up the remote.
The other problem is that once you start writing letters you discover that you can’t possibly write a letter to EVERYONE and what if you leave someone really important out and they forever wonder why you didn’t care enough about them to write them a letter, but you wrote a letter to so-and-so who you barely knew.
Before this all began, in my daydreams about what I’d do if ever I found myself in this particular situation (in addition to seizing the day and writing letters to loved ones) I’ve often wondered to whom I would write the letter that starts, “you probably don’t remember but….” Who would I get in touch with to let them know they made a difference to me in some small way they may not even be aware of? You know that friend who tricked you into reading your first novel (I double dare you to read just one chapter) and turned you into a reader (where are you now Carrie Comeaux?) or the teacher who really reached you. Because there are some people, including one or two teachers, who did a small thing for me that actually changed the course of my life for the better. Shouldn’t they know? I mean wouldn’t you get a charge out of finding out something you did, but have long since forgotten, had a positive influence on someone’s life? I know what you’re thinking. Why not just tell them? Why would you need to be dying to write a letter like that? And to that I say to you, heck I don’t know. Embarrassed to bring it up after all these years?
And so here we are, four and half months after diagnosis, and I still haven’t written a single letter. I still haven’t gone out and done some crazy thing I’ve always wanted to do but never got around to. The hard truth about cancer is that you may know that death is possible and you should prepare just in case. And you may know what you’d like to say to whom, but the drugs you take to dull the pain also dull the mind. On your bad days you’re weak and exhausted in which case you stay home, zombie-like in your chair. On your good days you work because, if you live through this, you can’t afford to lose your job. However, when the workday is done you have nothing left to give to writing letters or anything else. And then there’s this thing no one warned me about called “chemo brain” that makes it hard to form a cohesive thought sometimes. That’s why, to my surprise, I’ve had a hard time keeping up with the blog.
Now you know. But what I’ve described above isn’t something I think about or worry about every day. That’s how emotion is, one day you are up and another you are down. I’m not having too much trouble writing today after all.
The good news is I no longer feel like I’m going to die. My prognosis at the beginning was somewhere between 16% and 49% survival. I give this range because my diagnosis was Stage IIIC which none of the charts show because apparently it wasn’t a separate stage until 2003. Before that the stages went from IIIB to IV. Therefore the charts show survival rates for IIIB as 49% and for IV as 16%. I thought I’d seen a chart somewhere in the beginning that showed 36% survival for IIIC, but I can’t seem to find it now. At any rate, these are not good numbers. However, my cancer has shrunk rapidly and at my last treatment (which I’ll tell you about later) the onc could no longer feel any lumps at all. I’ll repeat that, much to the visible delight of my onc, he couldn’t feel ANY lumps at all.
Saturday, July 09, 2005
Fun Flies When You're Doing Time!
I can’t believe how much time has passed. A big whole bunch has happened since June 19, I’m not sure I can remember it all. I’ll try to sum it up without being too boring.
Here's the first story:
When I last scribbled here I still had a doc appointment ahead of me. Let me tell you, that one ticked me off! I saw the nurse practitioner and told her the problems I had with the taxol, the pain and numbness in my feet, and my fear of permanent nerve damage. I asked for alternatives. She discussed it with the doc who came in and asked me if I was sure I was having numbness in my feet or if maybe I thought it might be my IMAGINATION? You know, because he suggested it could happen. He also said it didn’t happen that fast, it should take a couple of treatments and I should have tingling in my hands. I was dumbstruck! What is with these doctors always thinking we imagine symptoms! I bet this damn cancer wouldn’t have made it to Stage IIIC before we found it if the docs had listened when I complained of pain in my breast and chest! They say cancer doesn’t hurt, but I think that’s BS. I think it’s been here awhile and I’ve felt it growing and the docs blew off my symptoms. This might sound crazy to you, but I've talked to other women who've been through this and I'm not the only one who had pain in places that the cancer later appeared.
Anyway, I digress. The onc says, we can change chemos, but they all have side effects. I told him I was concerned about the permanent side effects, not the temporary ones. He agreed to switch from Taxol to Taxotere. Common side effects: disgusting nails (meaning they may turn black and fall off) but will grow back to normal after treatment stops. And water weight gain. But the neuropathy is much less likely with Taxotere. After he left the room I broke down a little and told Luke I didn’t want to gain any more weight and when was this nightmare going to end. Luke assured me the onc said water-weight and I would be able to lose that after the chemo was done. I had collected myself by the time the NP came back in. Luke told her the onc didn’t believe me, but she said, “I believe you. And the important thing is he agreed to change the chemo.”
The next day after stewing over his response I called the NP and asked her if it would be difficult to change to another doctor. She didn’t think so, but asked why. I explained to her that my onc didn’t believe me when I told him what was happening with my body and I lost confidence in him. She said she’d call one of the other docs and did I have a preference? I didn’t know either and all things being equal, I’ll pick the woman. She said she’d call me back and let me know if the other doc could fit me in on the same day I was already scheduled.
A few minutes later the phone rang, the NP said, Dr. #1 wants to talk to you, is that okay? Oh sh**!! What can I say? No, I’m too much of a baby to talk to him? Of course I felt cornered, but I calmly said, “Sure.” He gets on the line and says, “Mrs. Brouillette, I absolutely did believe you, that’s why I agreed to change the chemo. I never would have agreed if I didn’t believe you. I’m sorry if I sounded doubtful, but I was so surprised because in my experience the neuropathy has never hit so quickly. Your comment about walking on a bar certainly convinced me that you weren’t imagining it. It’s just that you are totally off the bell curve! Again, I’m sorry I came across as if I didn’t believe you.” Then he said he’d understand if I still wanted to change doctors and he’d put the NP back on the line. Geez!! Now he decides to be human? After I mustered up enough anger to make the call to the NP in the first place? ! What did I do? I said it was probably best to stick with him since we were so far into treatment already. And that’s how that went. I had a week to recuperate and then – taxotere.
Here's the first story:
When I last scribbled here I still had a doc appointment ahead of me. Let me tell you, that one ticked me off! I saw the nurse practitioner and told her the problems I had with the taxol, the pain and numbness in my feet, and my fear of permanent nerve damage. I asked for alternatives. She discussed it with the doc who came in and asked me if I was sure I was having numbness in my feet or if maybe I thought it might be my IMAGINATION? You know, because he suggested it could happen. He also said it didn’t happen that fast, it should take a couple of treatments and I should have tingling in my hands. I was dumbstruck! What is with these doctors always thinking we imagine symptoms! I bet this damn cancer wouldn’t have made it to Stage IIIC before we found it if the docs had listened when I complained of pain in my breast and chest! They say cancer doesn’t hurt, but I think that’s BS. I think it’s been here awhile and I’ve felt it growing and the docs blew off my symptoms. This might sound crazy to you, but I've talked to other women who've been through this and I'm not the only one who had pain in places that the cancer later appeared.
Anyway, I digress. The onc says, we can change chemos, but they all have side effects. I told him I was concerned about the permanent side effects, not the temporary ones. He agreed to switch from Taxol to Taxotere. Common side effects: disgusting nails (meaning they may turn black and fall off) but will grow back to normal after treatment stops. And water weight gain. But the neuropathy is much less likely with Taxotere. After he left the room I broke down a little and told Luke I didn’t want to gain any more weight and when was this nightmare going to end. Luke assured me the onc said water-weight and I would be able to lose that after the chemo was done. I had collected myself by the time the NP came back in. Luke told her the onc didn’t believe me, but she said, “I believe you. And the important thing is he agreed to change the chemo.”
The next day after stewing over his response I called the NP and asked her if it would be difficult to change to another doctor. She didn’t think so, but asked why. I explained to her that my onc didn’t believe me when I told him what was happening with my body and I lost confidence in him. She said she’d call one of the other docs and did I have a preference? I didn’t know either and all things being equal, I’ll pick the woman. She said she’d call me back and let me know if the other doc could fit me in on the same day I was already scheduled.
A few minutes later the phone rang, the NP said, Dr. #1 wants to talk to you, is that okay? Oh sh**!! What can I say? No, I’m too much of a baby to talk to him? Of course I felt cornered, but I calmly said, “Sure.” He gets on the line and says, “Mrs. Brouillette, I absolutely did believe you, that’s why I agreed to change the chemo. I never would have agreed if I didn’t believe you. I’m sorry if I sounded doubtful, but I was so surprised because in my experience the neuropathy has never hit so quickly. Your comment about walking on a bar certainly convinced me that you weren’t imagining it. It’s just that you are totally off the bell curve! Again, I’m sorry I came across as if I didn’t believe you.” Then he said he’d understand if I still wanted to change doctors and he’d put the NP back on the line. Geez!! Now he decides to be human? After I mustered up enough anger to make the call to the NP in the first place? ! What did I do? I said it was probably best to stick with him since we were so far into treatment already. And that’s how that went. I had a week to recuperate and then – taxotere.
Sunday, June 19, 2005
Numbness
Let me tell you what a fun week I had. Everyday at work our systems have been up and down all day so very little actual work was completed. Very frustrating since it was the one week I had no appointments and could be there all week. Friday being a deadline date for the month added more frustration.
I had to take a pain pill by the end of each day through Wednesday. Wasn’t bad enough to need one Thursday or Friday. I’m even better today. No real pain, just achy ankles. Or maybe I’ve just become accustomed to the pain. Still some numbness in my feet, but in the immortal words of the Beatles, “It’s getting better all the time.” There’s a strip of numbness down the middle of my left foot from toe to heal. And there’s a patch of numbness remaining on my right foot. I’m sure the aching in my ankles is due to walking incorrectly. For example, I’m rolling my left foot to the outside because it feels as if I’m walking on a bar or something. And I’m walking on the ball of my right foot because the numbness is toward the back. I have to consciously make myself walk normally and not do that, but it feels mighty weird walking on numbness.
I’ve taken the neurontin for six days and it appears to be helping which is a relief. I’m truly afraid of how much of this numbness will be permanent. The doc’s warning about the taxol was that it could cause permanent nerve damage. He said it would start as tingling in the tips of the fingers or toes. Boy, was he wrong! It hit me full force within a week of having the chemo. And not just my feet. More disturbing then the numbness in my feet, for a few days I had trouble urinating. I had to really concentrate to relax that muscle and let it out. A slow trickle came out and that was all I could manage. I couldn’t quite empty my bladder and had to make frequent trips to the bathroom. I started to fear getting a bladder infection. Fortunately, that went away and I’m urinating normally again.
And here’s a really bizarre thing. Way back when, 17 years ago, when I was delivering Jeremy I had an epidural. Afterward for about two years I had a numb spot on my left thigh. It was about the size of a silver dollar. Well, it’s baaaack! And it’s a bigger area now, about the size of a saucer. Weird, eh?
Tomorrow I have an appointment with the oncologist. It's time to talk about options or alternatives. I'm really terrified to take anymore of that taxol. It may be time to stop the chemo. Though it's a tough decision to make when the pressure from all around is to do whatever it takes to live longer. But what is the point if you aren't even yourself, because you are hurting or too weak and tired to do the things you enjoy? Or crippled because you have permanent nerve damage in your feet?
But that's tomorrow's worry. Today I'm painting a bedroom wall and then I don't know what else.
The good thing that happened: Luke sent me flowers on Friday. And we went to see Batman Begins. It was pretty good.
I had to take a pain pill by the end of each day through Wednesday. Wasn’t bad enough to need one Thursday or Friday. I’m even better today. No real pain, just achy ankles. Or maybe I’ve just become accustomed to the pain. Still some numbness in my feet, but in the immortal words of the Beatles, “It’s getting better all the time.” There’s a strip of numbness down the middle of my left foot from toe to heal. And there’s a patch of numbness remaining on my right foot. I’m sure the aching in my ankles is due to walking incorrectly. For example, I’m rolling my left foot to the outside because it feels as if I’m walking on a bar or something. And I’m walking on the ball of my right foot because the numbness is toward the back. I have to consciously make myself walk normally and not do that, but it feels mighty weird walking on numbness.
I’ve taken the neurontin for six days and it appears to be helping which is a relief. I’m truly afraid of how much of this numbness will be permanent. The doc’s warning about the taxol was that it could cause permanent nerve damage. He said it would start as tingling in the tips of the fingers or toes. Boy, was he wrong! It hit me full force within a week of having the chemo. And not just my feet. More disturbing then the numbness in my feet, for a few days I had trouble urinating. I had to really concentrate to relax that muscle and let it out. A slow trickle came out and that was all I could manage. I couldn’t quite empty my bladder and had to make frequent trips to the bathroom. I started to fear getting a bladder infection. Fortunately, that went away and I’m urinating normally again.
And here’s a really bizarre thing. Way back when, 17 years ago, when I was delivering Jeremy I had an epidural. Afterward for about two years I had a numb spot on my left thigh. It was about the size of a silver dollar. Well, it’s baaaack! And it’s a bigger area now, about the size of a saucer. Weird, eh?
Tomorrow I have an appointment with the oncologist. It's time to talk about options or alternatives. I'm really terrified to take anymore of that taxol. It may be time to stop the chemo. Though it's a tough decision to make when the pressure from all around is to do whatever it takes to live longer. But what is the point if you aren't even yourself, because you are hurting or too weak and tired to do the things you enjoy? Or crippled because you have permanent nerve damage in your feet?
But that's tomorrow's worry. Today I'm painting a bedroom wall and then I don't know what else.
The good thing that happened: Luke sent me flowers on Friday. And we went to see Batman Begins. It was pretty good.
Wednesday, June 15, 2005
Support
I joined an online support group. Their experiences are so diverse even though most of them seem to be getting the same core treatment - adriamycin, cytoxan, taxol. I actually feel a little better about my doctor after hearing some of the things they've gone through. I'm especially confident about all the testing that was done initially. Reading about their situations makes it so totally clear to me that this is a hit or miss situation. The doctors really are "practicing" medicine and they don't really have a handle on this disease. That's scary. We want to have confidence in science and modern medicine, but it's clear that we're far from a good cure for cancer. We just hope the poison kills it and not us and that's basically what it comes down to. And maybe, if we're good, and hope real hard, we'll get out of this without TOO many scars, physical or psychological.
Tuesday, June 14, 2005
Pain Killers
I've been in a haze of painkillers since Friday. Big plans to write all about what I'm thinking about while I go through this poisonous journey. No use. Can't think when you're falling asleep from the hydrocodone. I tried to go to work yesterday and not take the pill, but after a couple hours I couldn't stand it anymore and took one. I'm also having numbness in my feet. Numbness sounds like something painless, but it's not. It's like when you sit on your feet too long. Not pins and needles, but swollen balloon pain. I'm walking like an old person with athritis in her feet. Like I'm trying not to step on my feet.
I called the doc (as instructed, "Don't wait until you've had numbness for two weeks, let me know early so maybe I can do something!"). His nurse, Mary, cold as ever, said, "Oh, nothing we can do so just tell him when you see him." A week from now. NO! I had to insist that she tell him and that he instructed me to tell him immediately. Reluctantly she agreed to pass the message on to him. Anyway, now I have another pill to take. Neurontin. I took it last night, after checking with my nephrologist (warning: tell your doctor if you have kidney disease) and getting an okay. I do feel better this morning. Not so much pain. It just feels like aches from too much exercise. And my feet, which I could hardly walk on, feel more like feet, though still some tingling numbness.
I'm going to try again today to work and not take the hydrocodone. I'm just taking some acetemetaphen.
This taxol is a totally different experience from the other chemo. No dizziness or queasiness. No aversion to different foods. No bad taste in my mouth. No flu-like symptoms. Just pain like I've been beaten in my sleep.
The day is just beginning so I don't have a good thing that happened today, unless you count a noticeable lessening of pain in my legs.
I called the doc (as instructed, "Don't wait until you've had numbness for two weeks, let me know early so maybe I can do something!"). His nurse, Mary, cold as ever, said, "Oh, nothing we can do so just tell him when you see him." A week from now. NO! I had to insist that she tell him and that he instructed me to tell him immediately. Reluctantly she agreed to pass the message on to him. Anyway, now I have another pill to take. Neurontin. I took it last night, after checking with my nephrologist (warning: tell your doctor if you have kidney disease) and getting an okay. I do feel better this morning. Not so much pain. It just feels like aches from too much exercise. And my feet, which I could hardly walk on, feel more like feet, though still some tingling numbness.
I'm going to try again today to work and not take the hydrocodone. I'm just taking some acetemetaphen.
This taxol is a totally different experience from the other chemo. No dizziness or queasiness. No aversion to different foods. No bad taste in my mouth. No flu-like symptoms. Just pain like I've been beaten in my sleep.
The day is just beginning so I don't have a good thing that happened today, unless you count a noticeable lessening of pain in my legs.
Saturday, June 11, 2005
Pain
Oh hell, the pain!! I can't believe it! It seemed like taxol was going to be easier going than the other chemo, but Thursday evening my legs started to hurt intensely. My leg bones and my joints, my knees, my hips, my ankles! I had aching bones with the shots before, but this is so much deeper. Thursday night I took some hydrocodone that I had left from when I had the migraine. It helped. Made me sleep.
I'd hoped it would ease by Friday morning, but it didn't. There's no comfort. Legs stretched out, folded in, leaning left or right. Heating pad, hot bath. Doesn't matter. A moment of relief and then stabbing pain from two or three places at once. Talked to Kate (the nurse prac)who said, yes, taxol can cause this kind of pain in some people. Should only last a couple of days and I could expect it after each treatment. She called in more lortabs. It helps, but it doesn't do what I want. I want to be totally body numb. It doesn't do that. I was hoping I'd wake up today and it would be over. I don't want to be fuzzy headed all day again. But the pain has not gone away. It has, in fact, spread to my upper body, shoulders, arms. I think my ribs hurt. I broke down and decided I'd have to have another day of pain killers. Wasted day.
I'd hoped it would ease by Friday morning, but it didn't. There's no comfort. Legs stretched out, folded in, leaning left or right. Heating pad, hot bath. Doesn't matter. A moment of relief and then stabbing pain from two or three places at once. Talked to Kate (the nurse prac)who said, yes, taxol can cause this kind of pain in some people. Should only last a couple of days and I could expect it after each treatment. She called in more lortabs. It helps, but it doesn't do what I want. I want to be totally body numb. It doesn't do that. I was hoping I'd wake up today and it would be over. I don't want to be fuzzy headed all day again. But the pain has not gone away. It has, in fact, spread to my upper body, shoulders, arms. I think my ribs hurt. I broke down and decided I'd have to have another day of pain killers. Wasted day.
Wednesday, June 08, 2005
Chemo 5 - over the hump
Down hill from here! At least as far as chemo goes. There's still the issue of surgery and possibly radiation, but that's for another day's worries.
I had my fifth treatment yesterday. The first of the four taxol. They said I won't grow my hair back just yet, though I do have some white fuzz sticking up on my head. I hope if it comes back white/gray it'll still be soft and not coarse like some gray hair can be. Or maybe it'll be a soft beautiful blond! Cool.
The side affects are much the same as the other; nausea, fatigue, hairloss. Of course the only hair I have left to lose is on my arms and I still have to shave my legs about every three or four weeks. I haven't had to shave my armpits in months though! That's been really neat. And my girlie parts are bald and smooth as a newborn baby. Funny problem that causes, ladies. If you've ever shaved down there you probably are familiar with the peepee problem. It seems your hair works as a trail for your pee to neatly follow down into the potty. Remove the hair and the pee goes everywhere! How's that for an unanticipated problem? You have to sit at just the right angle on the toidee to pee straight down. Otherwise, what a mess!
They told me the taxol usually doesn't cause as much nausea or fatigue. It also isn't so hard on the kidneys as the other two, (boy is that a relief!!) but may be some trouble for the liver. I can't help think how crazy a treatment is that calls for you to intentionally poison yourself! And yet, we all agree to it.
The big thing to look out for with taxol is nerve damage in the hands and feet. Melissa Etheridge stopped her treatment with this because she was having trouble with her fingers and, of course, she needs her hands for guitar playing. I don't play guitar, but I do need to be able to type. We'll see what happens.
The doc was very pleased with the rapidly disappearing breast tumor. I mean, he was clearly delighted. I asked him if it was normal for a tumor to shrink so fast. He laughed and said, with cancer nothing is normal or predictable. But then he admitted it had gone from a large tumor (about as long as a AA battery) to something the size of the very tip of a finger in a remarkably short time. Not to mention the one in my neck practically disappeared after the first treatment. Then he told us a story of one other patient he had that was Stage IV (Stage IV is almost certain to kill you, I think the survival rate is like 15%) whose cancer disappeared altogether following the same treatment I'm having. I got the impression he was saying she was the only other patient he had who had done that.
Disclaimer: I have mentioned the communications problem I have with this doctor, so I could have misread what he was telling me. But I gotta say, the man was giddy.
I didn't mention to him that I had lost track of the number of people who promised to pray for me and put me on their church prayer lists. I'm not a religious person but all that positive energy may just be doing the trick. Thanks folks. And despite my recent whining, I've really not had a terribly hard time of it when I put it in perspective. I've heard of other people who were much sicker and more miserable than I've been so far. I can go to work more days than not. I haven't had any vomiting. The meds have affectively controlled the nausea. The worst has been the total interruption of my life and the fatigue. But I've got a great support system and people who care about me. And I don't think I'm going to die this year anymore. (See how much better my attitude is when I'm not suffering from PMS?) Let's not talk about the blood transfusion or having to put off a treatment due to liver function levels or the creatinine rising or the other problems with various parts of my body....
The doc also changed his attitude a little about the mastectomy. Not his mind, just his attitude. What he said was, "when you're done with these four treatments you'll meet with Dr. Marler (the surgeon) and you and he will decide where to go from there." I don't know if he put it that way because Luke was in the room or what. Being naturally suspicious, my first thought was, he's already discussed it with Marler that's why he seems so willing to go along with whatever "we" decide. Stop it, Dawn!
So I had the new chemo yesterday. The whole thing takes about 4 hours (after you see the doc.) We arrived about 9:20 for the doc appt and left for home about 2:30 after the chemo. First they give you premeds that take about an hour. Tagamet and bendryl and decadron (sp?). Then 3 hours for the taxol. The benadryl made me sleepy. I brought a book on CD (sometimes it's hard to read during the chemo) and fell asleep listening to it. Luke brought me lunch, but I couldn't eat much. I slept a couple hours off and on. Then we went home and I ate two bowls of cereal and slept some more. Didn't feel sick at all, though. I even managed to sleep last night after all that daytime sleeping. The only glitch was I woke up with acid reflux and had to sit up and take antacid and eat bread to get the acid out of my mouth.
Today I went to work (after going to the hospital emergency room for my neulasta shot - if you ever have to do this I've discovered the best time is about 7 in the morning) and felt almost normal all day. Even my appetite. Just a little heart burn.
After work I even took a dip in Bobbie's pool after watering the outside plants. Now I'm home and sleepy, but not sick.
The good thing that happened today: in spite of chemo yesterday, it felt like a normal day. I'm even sitting here blogging.
What I want to do someday: parasail.
I had my fifth treatment yesterday. The first of the four taxol. They said I won't grow my hair back just yet, though I do have some white fuzz sticking up on my head. I hope if it comes back white/gray it'll still be soft and not coarse like some gray hair can be. Or maybe it'll be a soft beautiful blond! Cool.
The side affects are much the same as the other; nausea, fatigue, hairloss. Of course the only hair I have left to lose is on my arms and I still have to shave my legs about every three or four weeks. I haven't had to shave my armpits in months though! That's been really neat. And my girlie parts are bald and smooth as a newborn baby. Funny problem that causes, ladies. If you've ever shaved down there you probably are familiar with the peepee problem. It seems your hair works as a trail for your pee to neatly follow down into the potty. Remove the hair and the pee goes everywhere! How's that for an unanticipated problem? You have to sit at just the right angle on the toidee to pee straight down. Otherwise, what a mess!
They told me the taxol usually doesn't cause as much nausea or fatigue. It also isn't so hard on the kidneys as the other two, (boy is that a relief!!) but may be some trouble for the liver. I can't help think how crazy a treatment is that calls for you to intentionally poison yourself! And yet, we all agree to it.
The big thing to look out for with taxol is nerve damage in the hands and feet. Melissa Etheridge stopped her treatment with this because she was having trouble with her fingers and, of course, she needs her hands for guitar playing. I don't play guitar, but I do need to be able to type. We'll see what happens.
The doc was very pleased with the rapidly disappearing breast tumor. I mean, he was clearly delighted. I asked him if it was normal for a tumor to shrink so fast. He laughed and said, with cancer nothing is normal or predictable. But then he admitted it had gone from a large tumor (about as long as a AA battery) to something the size of the very tip of a finger in a remarkably short time. Not to mention the one in my neck practically disappeared after the first treatment. Then he told us a story of one other patient he had that was Stage IV (Stage IV is almost certain to kill you, I think the survival rate is like 15%) whose cancer disappeared altogether following the same treatment I'm having. I got the impression he was saying she was the only other patient he had who had done that.
Disclaimer: I have mentioned the communications problem I have with this doctor, so I could have misread what he was telling me. But I gotta say, the man was giddy.
I didn't mention to him that I had lost track of the number of people who promised to pray for me and put me on their church prayer lists. I'm not a religious person but all that positive energy may just be doing the trick. Thanks folks. And despite my recent whining, I've really not had a terribly hard time of it when I put it in perspective. I've heard of other people who were much sicker and more miserable than I've been so far. I can go to work more days than not. I haven't had any vomiting. The meds have affectively controlled the nausea. The worst has been the total interruption of my life and the fatigue. But I've got a great support system and people who care about me. And I don't think I'm going to die this year anymore. (See how much better my attitude is when I'm not suffering from PMS?) Let's not talk about the blood transfusion or having to put off a treatment due to liver function levels or the creatinine rising or the other problems with various parts of my body....
The doc also changed his attitude a little about the mastectomy. Not his mind, just his attitude. What he said was, "when you're done with these four treatments you'll meet with Dr. Marler (the surgeon) and you and he will decide where to go from there." I don't know if he put it that way because Luke was in the room or what. Being naturally suspicious, my first thought was, he's already discussed it with Marler that's why he seems so willing to go along with whatever "we" decide. Stop it, Dawn!
So I had the new chemo yesterday. The whole thing takes about 4 hours (after you see the doc.) We arrived about 9:20 for the doc appt and left for home about 2:30 after the chemo. First they give you premeds that take about an hour. Tagamet and bendryl and decadron (sp?). Then 3 hours for the taxol. The benadryl made me sleepy. I brought a book on CD (sometimes it's hard to read during the chemo) and fell asleep listening to it. Luke brought me lunch, but I couldn't eat much. I slept a couple hours off and on. Then we went home and I ate two bowls of cereal and slept some more. Didn't feel sick at all, though. I even managed to sleep last night after all that daytime sleeping. The only glitch was I woke up with acid reflux and had to sit up and take antacid and eat bread to get the acid out of my mouth.
Today I went to work (after going to the hospital emergency room for my neulasta shot - if you ever have to do this I've discovered the best time is about 7 in the morning) and felt almost normal all day. Even my appetite. Just a little heart burn.
After work I even took a dip in Bobbie's pool after watering the outside plants. Now I'm home and sleepy, but not sick.
The good thing that happened today: in spite of chemo yesterday, it felt like a normal day. I'm even sitting here blogging.
What I want to do someday: parasail.
Monday, June 06, 2005
Mastectomy
The thought of a mastectomy is very disturbing to me. I can't fathom having a part of my body removed. And I can't help being suspiscious of a medical community that has historically treated women with considerable less dignity than men. I've never heard of reports of doctors encouraging men to have parts of their bodies removed if not absolutely medically necessary, yet this sort of thing happens to women. We all know women who have had things like routine C-sections and hysterectomies for reasons that don't make much sense. Is it any wonder that I buck at the suggestion of a mastectomy by a doctor who seems to have made up his mind, but is reluctant to discuss it with me? Of course, I know it is up to me whether we follow that course or not, but how do I make an informed decision when I don't trust the doctor? Perhaps something will change before the end of chemo and this line of thought will be moot, but until then I'm trying to hash it out and prepare myself for the worst.
The surprising thing to me in all this is many women's reaction when I tell them I don't want a mastectomy. They can't understand why this would be a problem for me. They invariably say, "Don't you want to live?" Which brings up the question, just how far would you go to live? What price will you pay? Mutilation? Kidney failure and thus life on dialysis? Alive, but feeling sick all the time, so that your life sucks? Life is only worth living if you can enjoy it. Of course, losing a breast wouldn't make life unbearable, but it would alter your life in a way that you shouldn't take lightly. The doc doesn't seem to think it's reasonable to want to know if there are other options, because TO HIM it's the best option. Some of my women friends have said they would have a mastectomy even if the doc told them a lumpectomy would do the job. They say, no one will be able to tell. You'll wear a prosthesis or have reconstructive surgery. But the point for me is not whether other people can tell. The point is I will have to look at myself in the mirror every day and my body will no longer look or feel like me. Perhaps I am a more tactile person, but this will change my life for me.
I went online and found pictures of women who had mastectomies. Some had reconstructions (there are different types) and others did not. The pictures were meant to reassure women facing this decision. My response to them was total emotional horror. They were terribly scarred. The reconstructions looked worse than the ones without. The women talked about how they had no feeling in their new breasts, which were just dead (tactilely) nipple-less lumps of flesh that didn't even come close to matching the other breast. How can someone not understand how disturbing this is for me?
Someone told me that someone told them that when they had their mastectomy the flesh inside the breast was removed, but the outer layer of skin and nipple were left intact so that she had implants (like a normal breast enlargement procedure) and looked fine. Of course, this is hearsay. If this is what can be done, it wouldn't be so bad, except you still would lose feeling. The only problem is my pitiful research has not born it out and again I get no reassurance from the doctor. I know the surgeon (who will do whatever is to be done) will tell me what my options are when the time comes. And I know at this point it's fruitless to worry about. But how can I help it when my mind brings it back to me?
The surprising thing to me in all this is many women's reaction when I tell them I don't want a mastectomy. They can't understand why this would be a problem for me. They invariably say, "Don't you want to live?" Which brings up the question, just how far would you go to live? What price will you pay? Mutilation? Kidney failure and thus life on dialysis? Alive, but feeling sick all the time, so that your life sucks? Life is only worth living if you can enjoy it. Of course, losing a breast wouldn't make life unbearable, but it would alter your life in a way that you shouldn't take lightly. The doc doesn't seem to think it's reasonable to want to know if there are other options, because TO HIM it's the best option. Some of my women friends have said they would have a mastectomy even if the doc told them a lumpectomy would do the job. They say, no one will be able to tell. You'll wear a prosthesis or have reconstructive surgery. But the point for me is not whether other people can tell. The point is I will have to look at myself in the mirror every day and my body will no longer look or feel like me. Perhaps I am a more tactile person, but this will change my life for me.
I went online and found pictures of women who had mastectomies. Some had reconstructions (there are different types) and others did not. The pictures were meant to reassure women facing this decision. My response to them was total emotional horror. They were terribly scarred. The reconstructions looked worse than the ones without. The women talked about how they had no feeling in their new breasts, which were just dead (tactilely) nipple-less lumps of flesh that didn't even come close to matching the other breast. How can someone not understand how disturbing this is for me?
Someone told me that someone told them that when they had their mastectomy the flesh inside the breast was removed, but the outer layer of skin and nipple were left intact so that she had implants (like a normal breast enlargement procedure) and looked fine. Of course, this is hearsay. If this is what can be done, it wouldn't be so bad, except you still would lose feeling. The only problem is my pitiful research has not born it out and again I get no reassurance from the doctor. I know the surgeon (who will do whatever is to be done) will tell me what my options are when the time comes. And I know at this point it's fruitless to worry about. But how can I help it when my mind brings it back to me?
Sunday, June 05, 2005
Mastectomy
The thought of a mastectomy is very disturbing to me. I can't fathom having a part of my body removed. And I can't help being suspicious of a medical community that has historically treated women with considerable less dignity than men. I've never heard of reports of doctors encouraging men to have parts of their bodies removed if not absolutely medically necessary, yet this sort of thing has been documented to happen to women time and again. We all know woman who have had things like routine C-sections and hysterectomies for reasons that don't seem to make sense. Is it any wonder that I buck at the suggestion of a mastectomy by a doctor who seems to have made up his mind but is reluctant to discuss it with me? Of course, I know it's up to me whether we follow that course or not, but how do I make an informed decision when I don't trust the doctor? Perhaps something will change before the end of chemo and this line of thought will be moot, but until then I'm trying to hash it out and prepare myself for the worst.
The surprising thing to me in all this is many women's reaction when I tell them I don't want a mastectomy. They can't understand why this would be a problem for me. They would not hesitate to have it done. They invariably say, "Don't you want to live?" Which brings up the question, just how far would you go to live? What price will you pay? Mutilation? Kidney failure and thus life on dialysis? Or, in light of my recent liver problems, some other organ failure? Alive, but feeling sick all the time so that your life sucks? To me, life is only worth it if you can enjoy it. Of course, losing a breast wouldn't make life unbearable, but it would alter it in a way that you shouldn't take lightly. The doc doesn't seem to think it's reasonable to want to know if there are other options because TO HIM it's the best option. And maybe it is, but I can't say right now because I don't have all the facts. And no one is asking the doc to lop off a part of his body.
Some of my women friends have said they would have a mastectomy even if the doc told them a lumpectomy would do the job. This leads me to wonder if they hate their own bodies or is that the depth of their fear of death. They say, no one will be able to tell. You'll wear a prosthesis or have reconstructive surgery. But the point for me is not whether other people can tell. The point is I will have to look at myself in the mirror every day and my body will no longer look or (just as important, if not more) feel like me. Perhaps I'm a more tactile person.
I went online and found pictures of women who had had mastectomies. The pictures were meant to reassure women facing this decision, but the women in the pictures were terribly scarred. I reacted to the pictures with emotional horror. How could this be okay? Some of the pictures showed the various ways reconstructions are done while others showed mastectomies without reconstruction. The ones without were actually less disturbing than the ones with. They use flesh from other parts of a woman's body (such as the abdomen) for the reconstructed breast. In one picture, for example, not only was her chest full of scars, but she was scarred all over her abdomen as if she had been eviscerated. Also her belly button was off center. The result was a crisscross of scars and a nippleless chunk of flesh with no feeling that came no where near matching her other breast.
Someone told me that someone had told them that when they went through it the flesh of the breast was removed, but the outer skin and nipple where left intact. In this way she had an implant (like you would with a breast enlargement) and it looked fine. This wouldn't be so bad, but it is hearsay and I haven't found anything online like this. My doctor, of course, is loathe to discuss it. I know the surgeon will tell me my options when the time comes and it's pointless to worry about until then, but I can't help it if my mind goes back there. I haven't looked at or for any more pictures, though. That was a bad idea.
I think what the doc doesn't understand (and some of my women friends) is how I will feel after it's done. He says once you have the mastectomy you will be all done with it. But I won't. I'll have to live disfigured for the rest of my life. He will, however, be done with me, so I guess that's a good thing.
Again this whole thought process may be pointless, because as the doc is fond of saying, it's too soon to discuss. Anything could happen. For example, I sure didn't expect the tumors to shrink so quickly. Now that I've gotten this out of my system I'll go back to being as optimistic as I can.
Sometimes I feel like life is just a series of tests. I wonder how I'm doing on this one?
The surprising thing to me in all this is many women's reaction when I tell them I don't want a mastectomy. They can't understand why this would be a problem for me. They would not hesitate to have it done. They invariably say, "Don't you want to live?" Which brings up the question, just how far would you go to live? What price will you pay? Mutilation? Kidney failure and thus life on dialysis? Or, in light of my recent liver problems, some other organ failure? Alive, but feeling sick all the time so that your life sucks? To me, life is only worth it if you can enjoy it. Of course, losing a breast wouldn't make life unbearable, but it would alter it in a way that you shouldn't take lightly. The doc doesn't seem to think it's reasonable to want to know if there are other options because TO HIM it's the best option. And maybe it is, but I can't say right now because I don't have all the facts. And no one is asking the doc to lop off a part of his body.
Some of my women friends have said they would have a mastectomy even if the doc told them a lumpectomy would do the job. This leads me to wonder if they hate their own bodies or is that the depth of their fear of death. They say, no one will be able to tell. You'll wear a prosthesis or have reconstructive surgery. But the point for me is not whether other people can tell. The point is I will have to look at myself in the mirror every day and my body will no longer look or (just as important, if not more) feel like me. Perhaps I'm a more tactile person.
I went online and found pictures of women who had had mastectomies. The pictures were meant to reassure women facing this decision, but the women in the pictures were terribly scarred. I reacted to the pictures with emotional horror. How could this be okay? Some of the pictures showed the various ways reconstructions are done while others showed mastectomies without reconstruction. The ones without were actually less disturbing than the ones with. They use flesh from other parts of a woman's body (such as the abdomen) for the reconstructed breast. In one picture, for example, not only was her chest full of scars, but she was scarred all over her abdomen as if she had been eviscerated. Also her belly button was off center. The result was a crisscross of scars and a nippleless chunk of flesh with no feeling that came no where near matching her other breast.
Someone told me that someone had told them that when they went through it the flesh of the breast was removed, but the outer skin and nipple where left intact. In this way she had an implant (like you would with a breast enlargement) and it looked fine. This wouldn't be so bad, but it is hearsay and I haven't found anything online like this. My doctor, of course, is loathe to discuss it. I know the surgeon will tell me my options when the time comes and it's pointless to worry about until then, but I can't help it if my mind goes back there. I haven't looked at or for any more pictures, though. That was a bad idea.
I think what the doc doesn't understand (and some of my women friends) is how I will feel after it's done. He says once you have the mastectomy you will be all done with it. But I won't. I'll have to live disfigured for the rest of my life. He will, however, be done with me, so I guess that's a good thing.
Again this whole thought process may be pointless, because as the doc is fond of saying, it's too soon to discuss. Anything could happen. For example, I sure didn't expect the tumors to shrink so quickly. Now that I've gotten this out of my system I'll go back to being as optimistic as I can.
Sometimes I feel like life is just a series of tests. I wonder how I'm doing on this one?
Saturday, June 04, 2005
Talk about Anger
About three weeks ago, for about a week, I was angry. Really angry. Overflowing with it. The anger came bubbling up out of me, like a pot of water left too long to boil. And like that pot of water, once it all boiled out I was left empty.
I didn’t realize the rage was growing inside me until I snapped at a coworker who reminded me of a policy change (yet another) that I had forgotten. I apologized immediately for taking my frustration over my memory difficulties out on her and she accepted my apologies. But the incident left me feeling out of control.
Why all the anger and frustration? Let me count the ways.
1. Apparently, chemo or stress or uncertainty (I can’t really say which because this is one of the questions the doctor has failed to answer for me) causes problems with memory. It’s a struggle to remember simple things or keep track of changes at work or family schedules at home. I’m not normally a list maker, but I’ve had to become one to organize my work. I feel like I’m loosing brainpower if not my mind (jury is still out on that).
2. I take pride in my work and now because of the time I’m forced to take off or due to utter exhaustion, I’m unable to do my job well. I can’t keep up. My work is behind and I can’t keep track of new policy memos. I’m angry with myself for not being able to overcome this situation and continue to do a good job.
3. This situation has taken over my life, my time, my freedom. I can’t get away from it. I am Cancer Woman day and night. From the dust that constantly gets in my eyes because my eyelashes are too few and short to protect them to the pain in my chest from the port being squeezed that wakes me in the middle of the night. Everything I do, I have to plan around cancer treatment.
4. Though I think it’s too late in the middle of treatment to change doctors, I’m getting more and more unhappy with the oncologist. He always seems to be rushed, running out of the room before I finish asking my questions. When I do get the questions out he tells me it is too soon to ask or I’m not paying attention. That means he thinks I’m arguing about treatment when all I want is an explanation. Please tell me why we are following this course of treatment and what is the next step. He seems to take these inquiries as questioning his decisions. He talks to me as if I couldn’t possibly understand. This, of course, is compounded by my loss of words, due in part to chemo. Sometimes it's even a struggle to get the words to come out of my mouth.
5. When I have a problem the doc tells me either, chemo doesn’t do that (and he sends me to another specialist or just shrugs) or acts annoyed that I didn’t tell him sooner, or gives me the impression that perhaps it’s my own fault? Or sometimes, he asks why I am telling him about something and not just calling my PCP. Of course then he fussed at me for telling my PCP something before mentioning it to him. It’s all very confusing and again, I can’t get straight answers out of anyone.
6. When this all began everyone at the Treatment Center was so nice and concerned and attentive. I thought as time went by that I would receive very thoughtful and comprehensive care. That has not turned out to be the case, at least not in the way I imagined. Oh, I think I’m getting the right course of treatment, with the chemo and the blood tests monitoring everything and the doctor visit schedule, etc. (Only because my own research online seems to suggest this is the most common way to treat Stage III breast cancer). The problem is there has been nothing beyond chemo and blood tests. For example, I expected some advice on nutrition because it’s hard to eat normal foods when everything tastes bad. Perhaps to even talk to a nutritionist. It’s important to eat more than Jell-O! Yet no one has talked to me about it beyond, “How’s your appetite?” Although I’ve told them “poor” the last 4 or 5 visits no one has commented on it. They write it down and go on with the next question as if I’m a research project and they’re just gathering data. When I directly ask they say, try to eat better. The only nutritional advice I’ve gotten is online (where I learned it’s important not to lose weight while undergoing chemo) and from my nephrologist who was concerned about my potassium and magnesium levels. The oncologist never even mentioned they were off as if his only concern is hemoglobin. This is scary to me as I am a whole person, not just blood and cancer. I don’t want to rid myself of cancer by forfeiting the rest of my health. Which leads to…
7. The doctor seems to think quantity of life is more important than quality. I may be misreading this, but it’s hard to tell because he won’t answer my questions about what happens after chemo. The first time I asked him what happens after the chemo is over he just said matter-of-factly, “Then you’ll have a mastectomy.” I was shocked at this because we had never discussed this. We had discussed lumpectomy. I reminded him of that and asked him if a mastectomy was necessary. I think this is the point he really started getting annoyed with me. He said for me it was the way to go. I asked him why? He said it was too soon to discuss. But it was clear he had already decided so I pressed him to explain why lopping off my breast was preferable to removing the lump. His response was because it is shrinking so fast there may not be a lump so we take the whole breast and that way we can chop it up and see if there is any cancer left. I asked if this was purely done “just in case” as a preventative measure or if there was a medical reason to do it. Wouldn’t a PET scan tell him if there was any cancer left? I still don’t know. He looked at me as if I was insane. Certifiable. This was the end of the conversation. Again he insisted it was too soon to discuss it. and quickly left the room. I had no choice but to let it go that day. Another day I tried to discuss it with him again. I told him, I need to understand what the steps are (after the chemo) that he'll take to decide what options I have. I told him I wasn’t questioning his authority; I just needed to understand everything. I want to be sure that what I am putting myself through, will be worth the outcome. Again he insisted it was too soon to discuss it. This only worries me more. It tells me that whatever lays in store can’t be good because he would offer nothing beyond the very next chemo treatment. And I feel he is denying me the power to make decisions based on my own priorities.
8. There has been no concern (at the center) about how I’m doing emotionally (or my family for that matter) or suggestions for dealing with this. I might as well have the flu. Even though, like the poor appetite, I’ve told them I often don’t sleep well unless I take a sleeping pill.
9. It has become clear to me that the doctor and his staff have no regard for any one’s time but the doctor’s. They have no trouble calling me at the last minute and asking me to come at a different time than scheduled. Never mind that I’ve had an appointment for over a week, at a time they initially insisted on. I’m coming from 80 miles away. I often am relying on someone else to take me who has arranged their schedule to accomodate me. Sometimes I have scheduled appointments with other doctors on the same day which they are well aware of. Then they become highly annoyed if I’m unable to change my schedule to suit their whim. My last appointment they asked if I could come early in the morning because the doc had hospital rounds in the afternoon. I told them, no problem. I arrived 20 minutes early, was the second appointment and I still waited two hours after my appointment time before the doctor came in. Why? I don’t know. Maybe he decided to do his rounds first. Then he told us, based on LAST WEEK’S blood work, he decided not to do chemo that day. Now tell me why he didn’t call me and tell me this and save me the trip (and gas $)? Not to mention the prescription I took before leaving the house in preparation for chemo that I now have to refill - another $24. And Luke and I both missed another workday unnecessarily.
These are some of the things I was and am angry about. The ones that immediately come to mind, anyway. I have better control of it now because I think my hormones have leveled off some. At least the vaginal bleeding seems to have stopped. And as I said before, this week off from chemo has done me some physical and emotional good.
I just did a word count – 1550 words. That’s a whole chapter. Which reminds me, I should be working on my young adult fantasy novel not complaining about my current lot in life.
The happy thing that happened: Got a postcard from Egypt where my sister Sharon took a two-week trip. How cool is that?
I didn’t realize the rage was growing inside me until I snapped at a coworker who reminded me of a policy change (yet another) that I had forgotten. I apologized immediately for taking my frustration over my memory difficulties out on her and she accepted my apologies. But the incident left me feeling out of control.
Why all the anger and frustration? Let me count the ways.
1. Apparently, chemo or stress or uncertainty (I can’t really say which because this is one of the questions the doctor has failed to answer for me) causes problems with memory. It’s a struggle to remember simple things or keep track of changes at work or family schedules at home. I’m not normally a list maker, but I’ve had to become one to organize my work. I feel like I’m loosing brainpower if not my mind (jury is still out on that).
2. I take pride in my work and now because of the time I’m forced to take off or due to utter exhaustion, I’m unable to do my job well. I can’t keep up. My work is behind and I can’t keep track of new policy memos. I’m angry with myself for not being able to overcome this situation and continue to do a good job.
3. This situation has taken over my life, my time, my freedom. I can’t get away from it. I am Cancer Woman day and night. From the dust that constantly gets in my eyes because my eyelashes are too few and short to protect them to the pain in my chest from the port being squeezed that wakes me in the middle of the night. Everything I do, I have to plan around cancer treatment.
4. Though I think it’s too late in the middle of treatment to change doctors, I’m getting more and more unhappy with the oncologist. He always seems to be rushed, running out of the room before I finish asking my questions. When I do get the questions out he tells me it is too soon to ask or I’m not paying attention. That means he thinks I’m arguing about treatment when all I want is an explanation. Please tell me why we are following this course of treatment and what is the next step. He seems to take these inquiries as questioning his decisions. He talks to me as if I couldn’t possibly understand. This, of course, is compounded by my loss of words, due in part to chemo. Sometimes it's even a struggle to get the words to come out of my mouth.
5. When I have a problem the doc tells me either, chemo doesn’t do that (and he sends me to another specialist or just shrugs) or acts annoyed that I didn’t tell him sooner, or gives me the impression that perhaps it’s my own fault? Or sometimes, he asks why I am telling him about something and not just calling my PCP. Of course then he fussed at me for telling my PCP something before mentioning it to him. It’s all very confusing and again, I can’t get straight answers out of anyone.
6. When this all began everyone at the Treatment Center was so nice and concerned and attentive. I thought as time went by that I would receive very thoughtful and comprehensive care. That has not turned out to be the case, at least not in the way I imagined. Oh, I think I’m getting the right course of treatment, with the chemo and the blood tests monitoring everything and the doctor visit schedule, etc. (Only because my own research online seems to suggest this is the most common way to treat Stage III breast cancer). The problem is there has been nothing beyond chemo and blood tests. For example, I expected some advice on nutrition because it’s hard to eat normal foods when everything tastes bad. Perhaps to even talk to a nutritionist. It’s important to eat more than Jell-O! Yet no one has talked to me about it beyond, “How’s your appetite?” Although I’ve told them “poor” the last 4 or 5 visits no one has commented on it. They write it down and go on with the next question as if I’m a research project and they’re just gathering data. When I directly ask they say, try to eat better. The only nutritional advice I’ve gotten is online (where I learned it’s important not to lose weight while undergoing chemo) and from my nephrologist who was concerned about my potassium and magnesium levels. The oncologist never even mentioned they were off as if his only concern is hemoglobin. This is scary to me as I am a whole person, not just blood and cancer. I don’t want to rid myself of cancer by forfeiting the rest of my health. Which leads to…
7. The doctor seems to think quantity of life is more important than quality. I may be misreading this, but it’s hard to tell because he won’t answer my questions about what happens after chemo. The first time I asked him what happens after the chemo is over he just said matter-of-factly, “Then you’ll have a mastectomy.” I was shocked at this because we had never discussed this. We had discussed lumpectomy. I reminded him of that and asked him if a mastectomy was necessary. I think this is the point he really started getting annoyed with me. He said for me it was the way to go. I asked him why? He said it was too soon to discuss. But it was clear he had already decided so I pressed him to explain why lopping off my breast was preferable to removing the lump. His response was because it is shrinking so fast there may not be a lump so we take the whole breast and that way we can chop it up and see if there is any cancer left. I asked if this was purely done “just in case” as a preventative measure or if there was a medical reason to do it. Wouldn’t a PET scan tell him if there was any cancer left? I still don’t know. He looked at me as if I was insane. Certifiable. This was the end of the conversation. Again he insisted it was too soon to discuss it. and quickly left the room. I had no choice but to let it go that day. Another day I tried to discuss it with him again. I told him, I need to understand what the steps are (after the chemo) that he'll take to decide what options I have. I told him I wasn’t questioning his authority; I just needed to understand everything. I want to be sure that what I am putting myself through, will be worth the outcome. Again he insisted it was too soon to discuss it. This only worries me more. It tells me that whatever lays in store can’t be good because he would offer nothing beyond the very next chemo treatment. And I feel he is denying me the power to make decisions based on my own priorities.
8. There has been no concern (at the center) about how I’m doing emotionally (or my family for that matter) or suggestions for dealing with this. I might as well have the flu. Even though, like the poor appetite, I’ve told them I often don’t sleep well unless I take a sleeping pill.
9. It has become clear to me that the doctor and his staff have no regard for any one’s time but the doctor’s. They have no trouble calling me at the last minute and asking me to come at a different time than scheduled. Never mind that I’ve had an appointment for over a week, at a time they initially insisted on. I’m coming from 80 miles away. I often am relying on someone else to take me who has arranged their schedule to accomodate me. Sometimes I have scheduled appointments with other doctors on the same day which they are well aware of. Then they become highly annoyed if I’m unable to change my schedule to suit their whim. My last appointment they asked if I could come early in the morning because the doc had hospital rounds in the afternoon. I told them, no problem. I arrived 20 minutes early, was the second appointment and I still waited two hours after my appointment time before the doctor came in. Why? I don’t know. Maybe he decided to do his rounds first. Then he told us, based on LAST WEEK’S blood work, he decided not to do chemo that day. Now tell me why he didn’t call me and tell me this and save me the trip (and gas $)? Not to mention the prescription I took before leaving the house in preparation for chemo that I now have to refill - another $24. And Luke and I both missed another workday unnecessarily.
These are some of the things I was and am angry about. The ones that immediately come to mind, anyway. I have better control of it now because I think my hormones have leveled off some. At least the vaginal bleeding seems to have stopped. And as I said before, this week off from chemo has done me some physical and emotional good.
I just did a word count – 1550 words. That’s a whole chapter. Which reminds me, I should be working on my young adult fantasy novel not complaining about my current lot in life.
The happy thing that happened: Got a postcard from Egypt where my sister Sharon took a two-week trip. How cool is that?
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