Starting Chemo in June 2005
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I had my first Taxotere last Thursday and am still suffering from the side effects. I was ok on Friday and most of Saturday, and Sunday hit me like a huge truck! My DH, of course, had to go out of town on Sunday and didn't come back until Tuesday night. I have had extreme bone and muscle pain, weakness, and nausea. I slept the first three days (except for when I had to take the 2 terriers outside) and I still have tons of pain. I called the dr and she said to take advil and darvecet for the paint (alternate) and they didn't even touch the pain. I called again today and now she upped it to 4 advils every 8 hours and 2 darvecet every 4 hours. God, I hope this works! My DD is coming homr from college for the weekend and I was hoping for her to not see me in pain at all....so cross your fingers that it gets batter today...it's got to!
I have surgery to take out my left ovary to test it for cancer on the 13th. I'm crossing my fingers that it's not cancer since staging for the cancer is terrible! My dr said that if it is cancer (it takes 15 min to test) then he will just close me up and we will prepare for the staging surgery in a few weeks. Please pray that it's not cancer....I don't think I can take much more of this.
Sorry to be just a downer today..but it feels good to let it off my shoulders. Thanks fo listening. -
Scout..I feel so bad for you for having such a terrible time with this. I will certainly be praying that the 13th turns out to be good news.
Dana..Also praying for your Mom. Hope you get good news to report too.
We've all had enough bad news...bring on some good!
Liz -
Itell you ladies with Taxol pain, ask your onc about the declining dose of decadron for the days after treatment. I was taking 5 Advil every 4 hours after tx #1 and still whining about the pain, but the decadron really, really made it manageable.
I had tAxol #3 today, and I'm feeling really good now. Watson, I was still awake at 4 and got up at 7, so hopefully I will sleep well tonight, though I'm still buzzing from the decadron in the coctail today and the three cups of coffee I drank during the infusion. I had to go straight from infusion to the rad. onc consult, and I was afraid I would be too spacey, so I tanked up on coffee.
I met the rad onc, she's a cute, oriental baby. I swear they get younger and younger. She looks like she's about 19, but I really liked her, she was extremely easy to talk to, and very thorough and knowledgeable. She just finished her training at MD Anderson, and has just joined the Cleveland Clinic. I am still thinking about doing rads at one of the satellites around the city rather than driving downtown every day, but I liked her so well, that it sort of skews me toward doing the extra hassle of a longer drive and dealing with a parking garage every day.
She says they normally wait 3 1/2 to 4 weeks after the last chemo. Dana, I am surprised they are going to start yours so quickly. I was really hoping to start about Oct 3 so I would finish before Thanksgiving, but it looks like I'll go until the end of November. My birthday is the 29th, maybe I'll finish then. She's going to radiate the supraclavical area as well as the axillary, which I was surprised about. She said they do that if four or more + nodes, I had 5. So, I will actually have part of my throat irradiated. I worry about the burning, and now there's all that extra skin area. I guess it's the fear of the unknown again, I find I'm already starting to feel the trepidation of a new treatment.
Oh, yeah, I had mentioned that my son went for an interview yesterday. He got the job! He starts next Wednesday. Not too bad, getting a job 5 days after graduation, especially in this market. Mama's proud! Now he's car shopping, because it's 50 miles each way, and he has a pickup that only gets 13 mpg.
OK, I probably should be resting, but I feel good! Even threw the Frisbee with my two baby boys (ages 22 and 26).
We're gonna make it! -
Brenda...congrats to your son! That is good news...plus you are almost done with chemo...YAY! I am not looking forward to rads either...but try to look at it as just one more hurdle to get past and then we can celebrate!
Liz -
Wow, so much good news and also some possible not so good news.
Life continues to be a "mixed bag".
I haven't even thought about radiation. It seems like a dream when I project out about what is coming next.
I can't think beyond finishing this part.
Dana...keep us posted on your Mom.
Scout....hang in there....
Brenda...Great news for your son.
I may try somethng else for the pain for this last Taxol. I don't have to be a hero anymore. I just have to get trhough it.
I painted a tiny bit yesterday and didn't do too much damage. My eyes are still gunky so I blink a lot.
I have upped my ativan at night. So I am sleeping better. Sometime I am tempted to take a handful.
I'm not the type to do that ...I only think about doing that. -
Jo, I'm concerned that you seem to continue to be depressed. I admit that I spent a lot of time after getting my path report thinking about suicide, how I would rather die on my own terms than from BC. It's amazing how the brain works, I even started a page with all the web sites I use to manage our household accounts, with user names and passwords, etc., so my husband wouldn't be so lost. I considered making a manual on running the house for him or his next wife, even thought of women I'd like for him to see after I died. But, I've gradually gotten over that, and even though I think a lot about how much better things could have gone without my dumb Dr's misdiagnosis that cost me 10 months, I'm trying to put that past me and think about the future, as though I'm going to be a part of it. I think that's part of the "fake it till you make it" philosophy. I'm one to always be thinking about projects around the house and yard, and I think it was so disorienting for my husband for a while when I wasn't coming up with new projects I'd like to be doing, because I really felt like it wasn't going to matter to me. But now, I'm planning on us extending the deck next summer, moving some trees that are going to block the sun from the garden in ten years or so, putting in a window seat in the living room, and I fully intend to be here to see the results! Make plans, plant something! It's a great way to involve yourself in the future that you have control over. We're so lucky to have the medical care that we do, and we're going to be just fine!
-
Brenda ...you are "spot on" . I have got to get over this .......
Being busy has always rescued me in the past. -
It is official:
TAXOL SUCKS
But! Has anyone's nails fallen off???
Where do I start? I wish you all lived near me- we could have the biggest party in my house. Mr. Fluffy is a great bartender.
These are what you would call the dog days of chemo. You have run out of gas. You know you have to keep fighting but jeez loueeze- couldn't someone ELSE fight for a change? Why does it always have to be YOU?
Your body is plain worn out. Like you washed it too many times with bleach. You have had surgeries which if you weren't in a total state of shock you would have noticed KNOCK YOU FOR A LOOP by themselves! You have had chemicals pumped into your system that have attached to every rapidly growing cell in your body...the same ones that make you tick...give you energy...give you hair...make you happy...
The chemicals went in- caught any and all cells and killed them- but they hit a few of the others. And if you only did it one time you wouldn't have felt so bad... but HOW MANY TIMES DID YOU GO BACK FOR MORE??? Now your bodies have to rebuild themselves. All this leaves a mark. You are going to be tired,overwhelmed, depressed, cranky, pooped and plain sick of this sh!t.
I gave some suggestions a couple of posts ago about stuff for taxol pain...maybe you can talk to your oncs about them? I can empathize and feel for you and want to reach out and hug you but I wish I could take it all away for you... but if I could, before I did, I would ask you this, "You don't have to go anymore. You can stop right now- But if you finish the chances of you EVER having to do this again are really really low. So if you want to stop now just say the magic word..." and each one of you would pick finishing. You didn't go through all this for nothing. You did it so you NEVER have to do it again.
Girls, listen. I had a really bad cancer. All the beepers went off in the path lab. On Tuesday it will be four years for me. I know I am able to celebrate that because I did chemo. What the future holds for me is out of my hands. I finally learned that.
But right now, here I am, sitting in my office, typing this to you. Mr. Fluffy is lying on his back on the file cabinet snoring. It is a beautiful day outside. I have all my hair. My scars have become a part of me that I am proud of. I have to go outside in a minute to mow the lawn and I have a ton of projects planned for my future.
It ends. No matter how bad you feel right now- you will FINALLY be done. And days will pass, then months, then years. You WILL GET HERE. I will even give you Fluffy!
I am praying for all of you- Dana I hope your mom is ok. Scout I hope you feel better SOON. I pray all is well with that ovary. Jo, your daughter is going to be ok. You are a great mom. You are too hard on yourself. You will see- all the years of love and care you and Brenda have deposited in the mom bank count for a lot more than you can see now. A couple of missed days won't even make a dent in it.
I was a total mess four years ago. Now I find it was all a blessing. To get to know you girls and to maybe shine a light here and there on your paths is worth all that I went through.
I wish you could know what I know in my heart- just trust me when I tell you it will all be ok and you will be you again. -
No Surrender, you are a treasure.....
I had Taxol #3 yesterday, and I have felt great today! I know tomorrow it will hit, but I woke up feeling good and decided to go to Jazzercise, then I spent all afternoon car shopping with Justin. He ordered a car, has to wait two weeks. Just got back from getting ice cream with DH in his old Fiat convertible, one of the last converitble rides of this fated summer (there have been way too few - have to avoid the sun and all). But altogether a great, upbeat day. I really hated sticking my self with Neulasta, and tomorrow I will stay in bed, most likely, but today was a blessing. -
Jo, I really think a lot of your depression stems from the fact that you haven't been able to paint the way you want...especially since that is something you really love and do it so well! You should mention the depression to your oncologist. He may prescribe an anti-depressant or suggest you get counseling. Neither is something to be ashamed of. If you are having thoughts of suicide...even though they are just thoughts and you have no intention of acting on them, you need to get some help through this. Being on so many different medications may be affecting your mood also. Please talk to your doctor about all this. We all love you and care about you!
Liz -
Not being able to see well for the past two weeks has limited my ability to paint or read.That has made the days much longer.
I do have a psychologist on board. I am and will continue to use drugs to help me both phsysically and emotionally.
Up until two weeks ago I had been able to paint all the way through chemo.
Having my mother leave and my daughter go to college was difficult but I think I am O.K.
I have one more treatment to go .....and then I can get back to my old routines that make me feel like me again.
Thank you for caring but please don't worry about me. -
Whenever I used to get stuck in the bottom of the ocean, or laid out flat by the Dog Days of Chemo, or find I couldn't even do the things I loved anymore I would always think of this song - and it made me feel better. It is by the Five Stairsteps... and it is also TRUE:
Ooh-oo child
Things are gonna get easier
Ooh-oo child
Things'll get brighter
Ooh-oo child
Things are gonna get easier
Ooh-oo child
Things'll get brighter
Some day, yeah
We'll get it together and we'll get it all done
Some day
When your head is much lighter
Some day, yeah
We'll walk in the rays of a beautiful sun
Some day
When the world is much brighter
Ooh-oo child
Things are gonna be easier
Ooh-oo child
Things'll get be brighter
Ooh-oo child
Things are gonna be easier
Ooh-oo child
Things'll get be brighter
Some day, yeah
We'll get it together and we'll get it all done
Some day
When your head is much lighter
Some day, yeah
We'll walk in the rays of a beautiful sun
Some day
When the world is much brighter
Some day, yeah
We'll get it together and we'll get it all done
Some day
When your head is much lighter
Some day, yeah
We'll walk in the rays of a beautiful sun
Some day
When the world is much brighter
Ooh-oo child
Things are gonna get easier
Ooh-oo child
Things'll get brighter
Ooh-oo child
Things are gonna get easier
Ooh-oo child
Things'll get brighter
Right now, right now -
Actually, my fingernails are coming off pretty bad after 4 doses of the Taxotere and my two big toe nails are totally black and dead. So I have had some other side effects that I don't mention because quite frankly they are no big deal. I would rather remain positive than to complain about it. But just to let you know it does happen so you don't feel alone if it does. They will grow back.
Pam
Pam -
Day 4 after Taxol, and I feel pretty good. Yesterday wasn't bad at all. I feel like it's not hitting my hemoglobin nearly as bad as AC did, and the decadron helps so much to make the bone pain manageable. We're gonna make a wood fire and cook chickens out this evening - all the kids and grandkids are coming over. I hope I'm up for this, but if I get tired, I'll just tell them to take over, and I'll sit in my lawn chair in the shade. It's been years since I remember a Labor Day with good weather in Cleveland, it almost always is cold and rainy.
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We're having a rainy weekend in Florida...but it is nice to have an extra day off! The sun is coming out from time to time. We are planning on redecorating our bathrooms so went out to the stores to get some ideas. My shopping stamina just isn't what it used to be! Guess I'm saving some money that way!
Hope everyone is enjoying Labor Day weekend!
Liz -
Pam - did your finger nails fall off completely? Mine are starting to peel away from the nail bed. I have had 2 of 4 FEC and a few of my nails are half way peeled off and are very tender. I don't have any problems with my toenails yet... What did you do? I wonder if I need to put bandages on them to protect them or what? I am going to call the onc.
Jo - Hang in there, it will get better, we have to believe.
Dana - My prayers are with you and your Mom.
No Surrender - Thank you for your kind thoughts and encouragement!
On a lighter note...our holiday was wonderful. We took our grandkids on their first camping and fishing trip. Our 3 year old got to reel in his first fish. But I think he had the best time today playing with the worms we had left over. We had to watch the one year old, because he is at that age where everything still goes in his mouth!!
I hope everyone has a better week. I am going back to the health club this week. Wasted last week on the "Dog Days of Chemo". I am ready to get a little energy back.
God bless you all -
My nails have not come off completely. They are separating from the nail bed and a few are half way off. I put a bandaid on my one thumb nail because I tend to use that finger alot and it hurts. If they begin to smell I have soaked them in some vineger and water.
Friday I went to the Houston convention center to help set up another big shelter since the dome is full. I worked many hours on the medical clinic. It is amazing what is going on. I hear it is the same at the dome but I can only speak for the convention center. We have about 10,000 victums and about 30,000 volunteers! I helped set up a whole hospital. It is as complete as can be. As a mid-level healthcare provider I am able to function to see patients as provider and I was able to see a few women with various things. I am on my way again today. I am SOOOO tired but ever so fulfilled as a person and as a nurse practitioner.
Yes, I get the lecture from everyone I meet that I should not be taking care of people. (except my doctor who says it is OK) But most of anything they have including the GI stuff is not airborn and I am washing and using my Purell. Besides if I were to get sick...it is well worth it to me.
One of the most touching sights I saw this weekend was the special care area for special needs victims. The volunteers were combing their hair, fixing their nails, reading to them, helping them get everywhere, holding them....it was so beautiful. Reminds me that life is about taking care of others...so hard to stay on that focus in the middle of chemo...I forget and get so miserably selfish and think life is all about me. Anyway, it has been a great weekend volunteering at the shelter.
Pam -
Minerva - what a great way to spend your weekend! You brought me joy just thinking about how much fun you all must have had.
Pam - God bless you. I'm just outside of Little Rock and we have a lot of evacuees in my community, too - nothing like you do - but as much as we can handle. I haven't been able to do anything hands-on due to a very low WBC, but I'm hoping to remedy that. Now that I have some energy and a skyrocketing WBC, maybe I can be of some help.
I had to get Neupagen shots from Thursday through yesterday. What a way to spend the weekend. I know I was terribly whiney from all the achiness, but my family was good about the whole thing. I went back this morning for a CBC and my WBC had gone from 1.04 on Thursday to 48 this morning! No wonder my back felt like it was in a vice!!<p>
I'm feeling pretty good today, though, and it's going to be a normal day! Cleaning out my daughter's closet while she's at school so she can't see what I throw away or give away (bwahahahaha) and maybe even a trip to the used book store!! Hope you all have a good day, too!
Jen -
Pam,
Good for you! I am so happy you found such an amazing way to put your talents to use. I know how excited you were last week about the possibility of helping Katrina victims.
During my blah chemo weekend I watched CNN a lot and it really put things in perspective for me. I was laying around in my comfy bed, in MY OWN UNDERWEAR, air conditining blazing and knew where every one of my family members was. What's a little chemo grief compared to what those people are going through?
Don't get me wrong, my last AC is done and I'm thrilled!
On to taxotere and whatever that may bring. My oncologist told me that fingernail/toenail problems are NOT uncommon. We'll see. I've seen Pam's and they aren't that bad. If it's the worst thing that happens, so what? I personally know several people that have had the nails come off but that doesn't mean everyone's will.
I wonder if this 'hair' I'm sprouting will fall out. It's solid white of course and about 1/2 inch in some places. I'm getting a general fuzz all over the rest of scalp. Any thoughts?
Take care! -
Jen,
We must have posted at the same time. Have you been having back pain as well? Mine still hurts and they gave me vicodin. I don't want to stay doped all the time. Did they tell you yours was from Neupogen?
Sorry for all the questions, but inquiring minds want to know! lol -
LOL. Yes, my back pain was from the Neupagen. I had some Darvocet - not very exciting stuff. I much would have rather had some mind and body numbing narcotics! But I'm through it now. Just a little shoulder achiness is all.
My "buzz" seems to be getting a little thicker, also. I have to trim it every two weeks or so, but it seems like there's more to it than there was before. I've been wondering if it's just a teaser or if it's really starting to grow back.
As of right now my nails are the same. They did take on a slightly more brittle feel on the AC, but so far nothing different. Of course, I've only had the one taxotere so I guess we'll see what happens.
Like you said Watson, if this is the worst then bring it on! I still have my home, my clothes, my family... so much more than so many people have right now. -
Hi all, just checking in. I received Taxol #2 Friday and still a little achey from it. It still is alot easier than A/C. My eyelashes finally decided to leave me. I wonder, will by eyebrows be next?
Dana- Hope all turns out well for your mom. Mom's are the greatest aren't they?
Pam- How awesome is that? That is great that you are able to help out. Plus, such a great experience you'll have to share with those of us who aren't able to be there to help.
Jo- I won't worry about you---I'll pray instead as I do for all of the ladies here.
No Surrender- You're the best. I want to be just like you when I grow up. Happy Happy Anniversary to you today!
I am still amazed and grateful for all the wonderful people in my community that have continued their prayers and concern for me and my family. I hope all of you are recipients of the same kind of support. Where would I be without the strong arm of God working through all of these people? I am truly blessed.
~Mindy~ -
After 8 day the pain of Taxotere is finally leaving me. I'm still sore, and not up to moving around much, but it's 90% gone, so I am grateful for this!
DD came home from college this weekend (she had only been gone 1.5 weeks!) so it was nice spending time with her. DH and I worked in the garden a little....I mostly watched...but it was nice getting to see my beautiful flowers!
DH and I went shopping yesterday (boy, does this wear you out!) and bought a new tv for the bedroom....now I don't have to get out of bed and bang the top to make the buzzing noise go away...lol!
It's good to hear that everyone is doing well. I have surgery on the 13th to take out my ovary and then I have my second taxotere on the 19th. We are going to discuss what will be done so that I don't have the side effects I had this time...it was much worse than the CEF....which wasn't what I planned on. Hope the dr can come up with something! -
Today is my last Taxotere and my the end of my chemo. I am 2/3 of the way done, and nothings gonna stop me now. I start radiation very soon, and I'm hearing it's a piece of cake. I am celebrating!!
-
Congratulations Beta...that must be a wonderful feeling!
Scout...glad you are feeling better and in good spirits...we will be thinking of you on the 13th.
Liz -
Just a quick update-I am really busy right now-have been reading but haven't taken the time to post. My first Taxol did not go well 2 weeks ago-but last week was totally different and all is well. Hopefully in the next 2 weeks my life will slow down. Take care
KimB -
Congratulations Beta!! I hope you're celebrating this milestone!!
KimB - I hope things continue to get better for you!
Jen -
Had my last Taxol today. Afterwards my husband and I stopped and got some take out BBQ to celebrate.
Never thought I would get this far so I am hopeful. -
Wow, sounds like everyone's winding down. I had my rad consult last week, and I really liked this young female dr., just trained at MD Anderson. So, even though I had planned to do rads at one of the Cleveland Clinic satellites, I'll probably go into the main campus to be under her care. I swear, she was only about 15, though!
Taxol #3 has been the easiest yet, but I've stayed really busy, and I think I've just kept myself from thinking of it. The decadron has helped so much with the bone pain, though I do hate the out-of-body feeling I get with it. And I can't stop eating! I'm gonna have some serious damage control when this is all over!
I've been on line a lot looking for a house for our Maine vacation - I just can't wait to get away for a week or so between chemo and rads. I'm feeling optimistic, the weather is nice. I just hope I can keep my spirits up through the winter. -
Jo and Brenda - sounds like things are going very well. I'm so glad for you both. It's so encouraging to hear you all finishing. Seven weeks from today will be my last taxotere!! YIPPY!!!
I realized something today that made me feel so incredibly stupid! LOL. I realize I've been having hot flashes. I didn't think I could because I've had three periods since beginning chemo - though I'm about a week late for #4. Maybe it's stopped now. Anyway, I just chalked my feelings of intense heat to the horrible summer we've had here in Arkansas. It has been one of the hottest on record. But tonight as I was eating dinner with my daughter, in a cool house, I was overcome with heat, just like I'd eaten a hot pepper or something. DUH!!! It's not just the weather, is it?? I just have to laugh at myself. What do we do for them??
On a better note, I met a friend of mine this morning after taking the kids to school and walked for about 20 minutes. It felt great! In fact, I felt so good afterwards that I've had a totally normal day. Well, except for the newly discovered hot flashes - lol. Hope tomorrow goes as well. )
Jen
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