Starting Chemo, November 2013 Group
Comments
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I'm with you March ladies. My last taxol is 3/21. Then on to the 25 rad treatments which will not start until April. So I'm looking at the end of May at having all treatments complete.....fingers crossed. But it doesn't stop there....exchange and hysterectomy will follow. I started this journey in September 2013, it will probably end September 2014. Looking back, I never thought it would take a year.
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Paulette: I hope that you feel better soon with your blood transfusion.
lonnie: Welcome on board!
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Oh no Bigt, maybe there's a chance they'll miss you with the cuts!!
Lisa, I start 4 rounds of taxotere on Feb. 17, so my last one won't be until near the end of April. But, oh hell yes, yeah and great to EVERYONE who is finished or nearly so. It's nice to hear when anyone gets to walk out of this dark tunnel.
Jab sorry that you had such a rude experience at Costco. I really haven't seen any of that and it's somehow surprised me. Even the normally nasty customers at work are being better. I was talking to one the other day about how I couldn't find any of the old fashioned square scarves and she said that she'd use her seerger machine to make me some. A few days later she brought me four pretty scarves she made. They are just the right size, just light enough, and not at all scratchy. So there is hope for a nicer world I guess.
Smrvlr, kids, even teens, seem to take physical illness better than adults, I find. When my mom was using the walker and having a hard time getting around, the people who I found where most helpful to her were teenagers. I don't know how many times one would actually stop and wait for us to get to the door as they held it. They will probably be fine with your new look. Maybe just because it's different enough to interest them. Who knows, you may start a trend and all the girls will shave their heads.
Amazon, Paulette, hope you are both getting better.
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Re: How did it change me?
When I think how much I have changed since my dx, the obvious thing pops up like the changes to my physical appearance. Having a UMX and no reconstruction is something I am dealing with daily. I don't constantly think about not having a boob, but once in a while it hits me. It happens when I start feeling good and back to normal or when I wake up in the middle of the night and I'm half asleep, but I have to change my soaking wet clothes. While taking my shirt off in a dreamlike state I realize that my boob is missing and I start to panic: Holy sh*t, where's my boob?! What happened? Oh, yeah, they cut it off because I had cancer. Cancer? Why? Me?
I sometimes have similar moments when taking a relaxing bath. I close my eyes and think of something positive or blissfully not think at all then I open my eyes and look at my scarred chest and the same panic sets in again.
Anyway, I believe that I have changed in the way I think and perceive the world and myself.
I became less worried about the little things and enjoy the precious NOW more. I have become much more aware of how fragile a human can be. How temporary things are. I look in the mirror and I ask myself: Do I see a different person? Who do I see? Do I know her? Who am I?
I believe I am much more than I was before. I became more open and compassionate to other people's suffering and my own. I became more aware of human kindness. I became more patient with my body's and other people's weaknesses.
I believe I became much more in touch with my own humanity.
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Amazon -- That kind of body memory/forgetting a body part is gone is very common among amputees. Even after more than a decade after his amputation, my husband had to consciously work at remembering his leg wasn't there when he got up in the middle of the night. I've talked to amputees who have forgotten a leg was gone and landed (very painfully!) on the stump.
Ellen
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I am starting to wonder whether I have a sign on my forehead that says "I have cancer! Say strange things to me!"
I've posted before about the guy who kept saying "Chemo: the trip to death and back". Then there was the lady who was encouraging at first, saying she was a 26 year survivor. But she just had to go on and say "My sister and my two cousins had breast cancer too, but they are all dead now".
Yesterday I went to church, and a lady I didn't know sat down next to me. We had some nice chit-chat before and after the service, then she asked me whether she could pray over me (we were standing in the pew with some other people nearby.) I wasn't real comfortable with that, but it seemed rude to say anything other than yes. Well.....she launched into a couple of minutes with this prayer that kept using the phrase "I rebuke you". I couldn't figure out at first whether she was rebuking me or someone else. As she went on, I realized she was rebuking Satan and his minions for bringing evil (in the form of cancer) into my life. She started adding "Begone!" and stuff like that.
Holy crap!!! Totally creeped me out, but I do kind of have to laugh. I can't remember whether she is a regular, but if so, the answer is a definite NO if she asks again.
Ellen
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ellen: There will be unfortunately people in our lives that will remind us of our dx and make stupid comments or tell us stories we don't want to hear. How should we react? Get upset? Walk away? Or educate?
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Amazon- I get those moments too when having a perfectly nice days and happy and busy and it will hit me...I had cancer! Then the panic and hoping it is all gone and never comes back ! Or in the middle of the night when I wake up...or some days where I think of it more than others...
The friends I have that have had this say those feeling get less and less and we will eventually not think about it so much...hoping...
Got my port out today...stings and burns but so glad to have it out! One step closer...
jab, lisa, wallymama, bigt, ellen, smrlvr, Paulette- hope you are all doing better!
We will all get through this and be stronger for having gone through this!
Glad we have each other!
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I guess I can't say I wasn't warned. Day 4 of my first taxotere infusion and the pain due to what I think is interstitial swelling is nasty. It seems to be hitting all my arthritic joints the worst. Anyway, I have taken lots of dexa to reduce the effect but may have to take other steps. I'm open to suggestions???? Does this pain accumulate with additional infusions? Yikes!
Ellen - I think I have that sign in my forehead too. I really crave anonymity. But mostly I think people are trying to be helpful. But, I must say, you got yourself a bit of a fruitcake....!
You lucky girl Audra - no port!!! I hope all is healing well.
Amazon - I wonder how long it takes to get adjusted to the physical changes. It is startling to remember for the 1000th time I have lost a boob.
Have a good night everyone!
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Thanks, Audra, I think I finally AM better. Not gonna guarantee it yet: Have to get through a day without having chills and a temp of 103.5 first, because that's what I've been dealing with once or twice a day EVERY day for at least a week. Honestly, I can't remember; most of the last week or so is kind of lost in a fog of misery, lol. We were snowed in last week, so I was taking an antibiotic (levaquin) that my doc called in to the pharmacy for me, but although I wasn't getting any worse, I wasn't getting any better, either. Was afraid I'd have to go to the hospital (due to the high temps) over the weekend once we weren't snowed in anymore, but was advised that since it was *stable*, unless it got worse I should just wait til Monday morning and go to the cancer center and see my regular doc.
Which is what I did--or actually saw his nurse practitioner, but she's all kinds of awesome so that's fine. They took so much blood to test that I think they completely undid my transfusion from the week before haha. Amusing bit: I had been afraid I'd have to go into the hospital anyway; was afraid the fevers might be febrile neutropenia. Nope, not even close. Neulasta is definitely doing its job.
I was having chills while I was there, so they kept giving me their warmed blankets from the infusion room, and even let me wear one home.
In the end, they gave me a new antibiotic -- amoxicillin. When I took the first one my temp was 103, but it started coming down literally within minutes of taking that first pill, and that's the FIRST time it's come down on its own without requiring me to take off my hat, socks, blankets, any long sleeves shirts, and expose my legs at least to the knees. This time I was till fully dressed, and under a couple of blankets, and the temp just started dropping and if I had felt like it, I'd have jumped right up and cheered. Major victory.
Since then the highest it's gone is 101.5, and it's been all the way down to 99.4, which is ever so slightly lower than it's been for over an entire week. And no chills!
@jab - I had the pains on I think day 5 after my taxotere, but it was only bad for one afternoon/night, subsided to occasional manageable aches on day 6 and was gone completely by that night. I hope you will be that lucky....and I hope I'm that lucky next cycle!
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morning....well...im in the hospital...Illl write more shortly but please keep me in your prayers. Ill explain more but the most concerning thing is they found a area during the ct of my brain......they did a mri to clarify. waiting for results.....am totally freaked out...its been a stressful 24 hours......hoping yall are well!!!!
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Prayers for you Paulette!!
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paulette: You will be in my thoughts and prayers!
Lisa: I am glad to hear that your temp has gone down and starting to feel better.
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Oh Paulette, I'm praying for you. Also Lisa, get better soon, yah? However Ellen, I AM NOT casting demons out! That's one of those situations Ellen, where I would have been silent and politely shell-shocked, but later would have come up with all these wonderful retorts. It doesn't matter if someone like that "means well" when their behavior is that far off the wall!
For fun I've tracked the November 2012 group, just to see how long it took for hair, to cast off the chemo miasma, and just generally see how they've gotten on. Many of them still post because leaving the "bad year" behind takes some support and doing. Anyways, I hope that we can do the same: provide support to each other as we move forward. Practically, that means NONE OF YOU WILL BE LEFT BEHIND! Even if some of us are done (!) like Audra, and some of us move on to rads (Ellen & myself), it isn't as though we're out of here, our group of homies. This is where I feel bonded. Laugh at me if you like, but you here have been crucial to my getting through this with a speck of humor, self-worth and lack of despondency. Thank you.
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Paulette- Many many gentle hugs and lots of positive calming and healing prayers, thoughts and energy. Thinking of you and please keep us posted.
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Thinking about everyone out here, as I have you in my thoughts and prayers. I want to thank the gals who have sent private messages to check-in on me and seek me out. I'm here...just not writing much but the reading and the friendships mean everything to me...thank you.
Just managing T&C #4, Day #7 post-chemo/Neulasta and whatever. Think it's all having a cumulative effect on me, especially my stomach, intestines, fatigue, strength. but it's alright.
Ellen-I'm no longer amazed at anything people say to me...cannot even waste time figuring it all out. People say some outlandish things, they really do. What comes out of others' mouths is all about them and not us/you. When I saw my sister recently, she told me "I looked like walking death...that I absolutely looked like s**t." Geez...thanks.
Hey, Pat...I'm having radiation, too! Going to discuss Accelerated Hypo-fractionated Whole Breast Therapy versus traditional External Beam Radiation with my MO in two weeks. It's 16 treatments versus 35...cuts the treatment time in half. Another in-network facility offers it, but. I'm not sure I'm a candidate for the internal beam stuff...definitely not for the MammoSite.
Hugs to everyone going through a rough time.
My thoughts and deep concerns are with Paulette.
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jab...forgot to mention...take in plenty of fluids, so you can accelerate "flushing" the nasty stuff out of your body. I KNOW it's hard to do with nausea. Also, I start with acetaminophen for pain (because I cannot take ibuprofen due to bariatric surgery). For days #2-5 or so post T&C and Neulasta, my MO gave me Vicodin with acetaminophen for the pain. Dr. Reynolds told me "not to mind all the noise about acetaminophen 'masking' fever...simple acetaminophen will NOT mask or hide a fever/infection that approaches 100.5 F plus."
See if your MO will give you something extra for the pain.
Hang in there.
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Hi ladies....
Paulette, i am so sorry to hear you are in the hospital. I sending healing prayers your way.
Tonilee, it is god to,see yo back here. I hope you are well.
Ellen, when I go back to work I am sure well meaning people will say things to me that I will find questionable. That is why I am nervous about going back. I hate when people say "you look so good." I don't know if it is true, if they expected me to look horrible, or if I really do look sickly and they are being nice.
Jab, sounds like the SEs of taxotere are the same as taxol. I also have the body pain and intentional issues. I have so much gas and flatulence. For the bone pain, I take Advil. For 2 nights last week ( day 2 and 3)' after infusion I even took a hydro because I couldn't sleep. But I do walk every day and it seems to help. My doctor said to keep moving. Also, I did this yoga video and it seemed to help a lot. I also feel more fatigued, which I heard happens after being on chemo for a while. Even if I do a simple outing, I am so exhausted after! But I can't sleep!
Audra, I am so,thrilled for you that your port is out. I can't wait for that day. My doctor says porT removal is an outpatient procedure, but a co workers said her BS removed hers in the office. How did it work for you?
Lisa, it sounds like you are making some progress in the fever department. I hope it continues and that you are feeling better soon.
Pat, I'm with you....you ladies are my people and I couldn't have gone through this without you. I am also going through radiation after chemo, and by my calculations, I will be "done" with treatment by the first week in May. But , as we all know there is a mental aspect to this, and it may be a while before I can adjust to living in my new reality. I will be turning to this board, and I hope you all are here!
Well, here in New York we are looking forward to yet another snowstorm. 6-12 inches expected. I am so tired of this. I wish spring would come.
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Paulette, I will be praying for you! I already am! Keep the faith!
My temp is much better, thanks all. Only one "chill" spell today, and it was mild enough that I bundled up well and fell asleep. When I woke up, the fever was coming down on its own and I was sweating. Finally feeling that comfort I was so desperate for a few days ago.
If someone tried to cast out demons on me I'd probably ROAR at them just to see if it would scare the holy hell out of them. Sometimes people are way more scary to me than demons!
Pat, I plan to still be right here in this thread, too. I like y'all. I might not like the people in other threads. This is our place, and it's what we've all made it, and it's comfortable. I'll be here. No one left behind.
Sometimes the things people say are funny because of who says them.... Yesterday we were on the way home from the doctor and I was all wrapped in my warm blanket, head and all, and my husband said "Don't take this the wrong way because all I can see is your nose anyway, but you look like Mother Teresa." I had to giggle. A little while later I looked in the mirror and....now you have to imagine this....I'm wrapped, as I said, head and all, in the white blanket they provide at chemo, BUT I also am tucked in from feet almost to my chin with my husband's military issue sleeping bag, in, of course, army green. I said to him, "Omg, I bet everyone that sees us thinks you are holding me hostage or something." He said he already thought of that. lol. I was a sight, that's for sure.
Taxotere/Cytoxan question: I'm on day 12 since my first TC, and not really having much in the way of side effects from that, but my taste buds seem to be in a state of rebellion. Not everything tastes bad, but nothing tastes like it should. It's like the center of my tongue is very confused about what its job is. Sweets taste normal, but that's it. Is this a taxotere thing, and if it is, does it last the ENTIRE cycle? Or is it more likely due to the antibiotics I'm on and my general sick puppy state?
Radiation for me too. Six weeks worth of it. I dread it! Not because of the radiation itself but because (this is insane) I haven't been ANYWHERE without my husband since my surgery in October, and I'll be driving myself to radiation. I'm sure I'll be fine after the first time though.
Smrlvr, I'm way down in North Carolina where it's only snowed once but that was enough. I actually changed my desktop wallpaper today to one that shows a dreary snowy and icy winter scene, all grays and whites, and it says "f**k winter." (without the asterisks.) I felt that about summed it up for me. I don't usually like to wish away the seasons because I feel like I'm wishing away my life, but this winter has been....well, you all know. I don't have to say it.
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Lisa-glad your feeling better.
Paulette-sending prayers and good thoughts your way.
I don't get too much in the way of crazy people talking or mentioning BC. When I wear my wig I've gotten a lot compliments. Most people at work (in other departments) haven't realized it's a wig yet.
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OHHHH Paulette- I am praying it's nothing !!! These tests are so nerve racking! HATE them!
Good to hear from you Tonilee, and I guess I'm glad I have no sister to say things like that...!
Pat- I will be here too and continue to NEED and give support to you all! I feel almost gloomy today and I should be so thrilled to have the port out, but sortof a 'what now' kind of thing....and what about the future? Some days I worry of recurrence more than others...
Lisa- Glad you are feeling better, good grief the temp sounds awful!
The Taxotere does make your tastebuds inactive for the first couple of weeks and then almost can taste and time for next infusion...that's how it was with me anyway...and my intestinal lining was fried by the 3rd infusion and I had stomach pain and burning until done...it's just gotten better and I'm on week 3 post Thursday. My nails are coming off on thumb only and peeling fingertips and my feet are still red and swollen...got those the last two infusions also...hope it's just me...
smrlvr= my port removal was scary! Just because done at hospital and I don't LOVE being a patient... Had to be admitted at hospital, get an I.V. (of course) they drew blood from that not port...and made sure platelets ok...then an' interventional radiologist' removed it...I requested no versed or 'knockout' meds so he just gave me the local anesthetic and I felt a lot of tugging at the port site and he cut stitches around it as when it was put in she stitched it in place so it didn't roll...anyhow then he said it's out...but I did have some feeling in stitching - he did internal stitching and top layer as well...yesterday it burned and stung and still does occasionally today...have steri strips over it and told to let those fall off by themselves...got red from tegaderm again...thought that was because chemo but must be just allergic to the tape...
Anyhow thrilled to have that out ! HATED the port....but it did work well for infusions, I will give it that!
Jab- My muscles/body didn't get worse, just hurt the most the first time...so that sounds positive right? Hope you are feeling better!
Ellen- Your story sounds funny! I think I might have laughed or said 'are you kidding?" I believe in God and Satan but that sounds ridiculous!
I am going for P.T. appointment tomorrow to check my armpit/arm area...not sure why it still gets numb and irritated with tight armpit clothing...hoping NOT lymphedema!
SOOO thankful for you all!
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thinking of you Paulette ANC praying for good outcomes.
Lisa, sounds line my tastebuds. Mine improve right before my next treatment. They are almost always now completely kit of whack. The upside is that both coffee and sweets taste bad so I think I've kicked those addictions for good.
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I'm definitely feeling better, but am also still getting the chills, so it wasn't quite a miracle cure. Still, much better than before, so if tomorrow is better than today, I'll consider myself on the road to recovery.
Naturally, when my temperature is low and I'm feeling pretty good and I should be all happy because I'm not miserable, instead I'm depressed and gloomy because I've been sick for a week and might be sick for days yet. Aren't we silly creatures sometimes?
Thanks for taxotere info, Audra. I guess I just won't bother to eat anything I like much for the next few days. Bottoms of my feet are a little touchy already---maybe getting a boost from all the fevers, so I suspect I'm going to have problems with both those and my hands. I'll get thru it I reckon. So far, Taxotere has left me alone where intestinal issues are concerned; no nausea, no constipation, just a touch of something that was almost diarrhea, and I did have that one case of heartburn but that was my fault for eating a peanut butter and jelly sandwich and then lying down on just one flat pillow to take a nap. :P Still though, I've got 1 more with cytoxan to go, and then two of just taxotere so i guess almost anything could happen over the next weeks. I'ts like a carnival funhouse: There's a surprise around every corner!
Tell you what, when they get ready to take out my port --- and I can't wait for that day --- I will take any and every medication they want to give me, and then some. I still have major procedure-phobia. In fact, I actually have two choices about where to get it done, and I'm going to question them both and then go with the one that will knock me out the most.
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Paulette, My heart is with you! You are a strong one so I know your going to be OK. Please let us know whats up when you know.
Tonilee/Audra/smrlvr - Thanks for the heads up and glad to hear your voice Tonilee. I went to see my Onc today and I'm back on Predisone and more Dexa. Less pain, no sleep but, hey I'm getting better??!! (there was a bit of sarcasm there...)
Lisa - Glab your turning a corner with the chills. Good to hear that hubby is keeping you warm too...I also have lost my taste buds, which is to my DH advantage. Because I can't taste, everything is now got a bit of extra 'zip'. (more spice). Fruit, veggies - Yuck! They taste like mold. This is coming from a girl who has one foot on the vegetarian camp and really does live on nuts and berries so I'm not sure what to make of my new Carb only diet.
To those doing Rads - I too am am up for the 5 week program, with a three week work up. I'm not sure what that means exactly but I guess they do a lot of prep. I have three sites, again, I'm not sure what that means but I'll be here talking about it...
All - I too think of this as a special place where I share with my friends. I have NEVER done anything on line like this and have been really amazed at how intimate this has become. Although we are from different places and are different people, you have all helped me so much with just the right insight at just the right time. For that, I thank you all so much. I know I will be here as long as I can be helpful too, however that might be.
Weather - You in NY/NC can keep your snow! We are scheduled for 40 cm over the next few days. I like snow but, wow, does it make it hard to move when you really can't move without it. Ok, I'm going to whine, but this has been the coldest, crappiest winter in this area for many years. Perhaps that it just how I'm suppose to reemember it - All those that will follow will be brighter...
Have a warm night ladies!
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hi everyone: Paulette I pray that they won't find what they're looking for on your head. If we all put our heads together we will come out winners.
I got sick when I was infused with taxotere the day 3. Severe joint bone pain. I went to see the doctor and he prescribe Tylenol 3. It helped me also I had severe mouth ulcers and he gave me something to numb the pain. I couldn't eat solids so the doctor prescribe Ensure. This lasted six days and nights. I had my fourth chemo on January 15. Now today is February 4th it's my fifth chemo. I pray this it's not going to be hard on me. One more chemo to go. Hooray. After this I don't take anything but get better. In April I start radiation for five weeks. Then one year of Herceptin every three weeks for 1/2 hour instead of an hour. I will go closer city for that. shoot! I have to have a port for a year but its not bothering me so I'm ok with that. I can go to work during that time but I won't be able to teach in a classroom setting. The principal ask me if I'm willing to teach in a resource room. I will be doing a lot of paperwork but that's better than teaching all day. I will be working with a lady who work with special Ed students for thirty years so I'm in a good setting. If all goes well I'm enthusiastic and happy for that move but I am going to follow the doctors order whether I go back to work or not.
Hope all of you are getting better. I was not in a mood to post because of my bad reaction of my fourth chemo.
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Paulette - still thinking about you and praying for you.
Phebe - sorry you are having such a rough time but I hope thinking about going back to work will give you strength to get through this.
The worst of the snow has not hit where I live yet so I am heading to my second to last treatment. I'm hoping the snow gets cleared up when I need to head home. Anyone else heading to treatment in this snow - take it slow and I hope you do not encounter any crazy drivers!
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Paulette: Hang in there! I keep praying and thinking of you!
Phebe: You are almost done! It must feel good to be so close to the end! I am getting myself psyched up for my upcoming Taxotere infusion which is on February 11th. I have been reading all the post about Taxotere and it sure ain't nothing to sneeze at! I'm not looking forward to the bone/ joint pain you people have been describing. I am definitely going to ask my MO for some pain meds just in case something pops up.
Inks, jab, smrlvr: I hate this winter! It's coming down quite heavily today. I was planning to go out to do some shopping, but gave up on the idea when I saw what was going on outside. It sure looks pretty, but can't get me out in that weather! The only time I ventured outside for a bit was to remove my bird feeder that was being attacked by a squirrel. This is the second time it happened. I moved it already once to make it squirrel proof, but the little **** just keeps coming instead of the birds! Hmmm.
Audra: I am happy for you that your port is out. It must be a great relief! I can't wait for my picc to go. I hate it. I even developed a blistery rash as an allergic reaction to the skin prep swab. At my last infusion, I was beggingn the chemo nurses to remove it. They all talked me into keeping it. They said the rash will get better if they clean the site with sterile saline only. And it did. So I am putting up with it for a little longer. Sigh.
Lisa: Bundle up and feel better soon. No more chills!
Jab, phebe, pat, ellen: I will be doing 5 weeks of rads sometime in the spring. I have 3 more of Taxotere to go first though. So I'll be looking for the heads up from you ladies.
Tonilee: What are the pros of the Accelerated Hypo- fractionated therapy vs the regular one?
Quirky, lisa, jab: Oh, tastebuds, how have you changed! I noticed that I am craving foods that I ignored for the longest time before, namely cheese. After my dx, I stopped eating dairy all together. Now I can't stop eating cheese! What's with that? Especially with some good carbs! OK, I think now I am going to have a bite of some yummy cheese again! Gimme some of that!
Wally: I am still in the tunnel!
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How do you like this? Don't you love winter?
Taken moments ago from the front of my house.
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It's really coming down now...
Better get the shovel ready.
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Paulette, so much concern for you...
Toni Lee, so my question, is it better to have medical knowledge going into all this stuff, or are we ignoramuses blissfully unaware?
Jab: cheese and white carbs. Mac & cheese, ritz crackers, potato w/butter, buttered white toast. Those were my taxotere num nums.
Amazon, that snow LOOKS divine!
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