February 2012 Chemo
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Hi everyone! Its been a tough couple of days, but its better now. I have to tell you, I'm still having a hard time feeling like I fit in here. But I do appreciate everyones thoughts. Yesterday was extremely difficult. I had bone pain which was unbelievable. It started in my chest, during the night, and before it was done I had a throbbing pain which came like a knife with every heartbeat. Thank goodness I have a slow heartbeat! It was similar in intensity to that of a broken rib, but was all of the ribs, all of the vertebrae, and the hips. I cancelled my afternoon and came home to 'deal with it'. To my amazement, in the evening it went away. Like a light switch. I had residual aches, but the pain went away. Tender mercies of the Lord.
Work is a little bit of a challenge, because I take care of sick people. So now, I am not seeing patients who have upper respiratory symptoms. Everyone who I see has to have their temperature taken before I meet with them. (That includes non patients - everyone - or I don't meet with them). If they have a fever, they are triaged to a different doctor. But I have plenty of physicals to do. Lots or orthopedics and sports medicine. Yesterday two of my patients had breast cancer. Both of them are survivors in the 20+ year range, and doing quite well. One had a mastectomy with nodes, and reconstruction. The other had radiation therapy. Success stories. And I include them here because I know everyone is telling you all this negative stuff. There are plenty of survivors out there who are doing well. It seems to be human nature to tell people horror stories. I see it in my newly diagnosed cancer patients. I see it in my new obstetrical patients. It is common enough that I caution both groups that it will happen, and advise that they turn a deaf ear to the negative.
And I'm sorry that many of you feel a lack of support from families. Some have great support, and others not so great. I just received a call from my adult son. He is sending me a new android phone, with lots of bells and whistles, internet, etc etc. He said he wanted me to have it during my treatments, etc. I think he knew I wanted one, but with three kids in college it was one of those wants on the back burner.
I am so very grateful to feel better today. Achy, but so much better. I appreciate each of you sharing. And to those of you who are just reading but not posting, I hope you are well too.
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First call, I am sorry we are not making you as welcome as we could, I'm sure we will all try harder. We want your input, and not just because you are a doc! LOL. I am also glad you warn your patients about the " advice" they may get. I always tel my kids, and I do the same, listen to it all, reseach what interests you and do what you feel you need too. I had to call my MOs office today to deal with the diarrhea. 8immodium did not work, and they said to call, dpI did. I am now on atropine, I hope it wot clog me up too much. Oh well, this stuff is so strange compared to anything we have been through who knows. I have a naturally low heartbeat, (hence my pacemaker) so not real worried. Much love, small SEs.
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firstcall
I wondered if you had had a down day because there were no fresh posts from you. Hey, you are going through exactly what we all are and I know I personally find your posts very insightfull. I assume you had the Neulasta shot hence the rib pain. All of the posters recommend Clariton and I for one will be taking it next TX. While my back spasms are all but gone, I had a weird achiness last night on both sides of my jaw, didn't last long but I thought, ooh noooo!
Good thing you can triage those patients that put you at risk of infection and I appreciate you relaying the story of your 2 BC patients. Its helps alot. And finally, enjoy that new Android!! What a wonderful son!!
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firstcall - I love meeting bc survivors...it gives me a lot of hope. Thanks for sharing.
Did the big shave today. I did not want to watch my hair fall out and I'm told it would have started falling out around day 14, and been gone by a month after treatment #1. Today is day 12. The hairdresser that did it is a volunteer for "Look Good, Feel Good" and he was so nice. Took the hair off (donating it to Locks for Love), and he trimmed and styled my wig, and also let me try on a bunch of wigs, and he gave me two to keep and trimmed and styled them as well. I was a little tearful at the start but it wasn't bad.
Still have my itchies around my port site and my SLN biopsy site, as well as an area on my thigh. Onc told me to use Benedryl cream for it, and to call IMMEDIATELY if I get any signs of infection (fever, area becomes hot or swollen, etc.) but so far it has not. The itchy area on my arm that appeared last Sunday is fading. The mouth sores I had earlier in the week, disappeared after 48 hours, although the corners of my mouth are cracked and yucky. My horrible facial skin (red, peeling) is slowly improving. There is light at the end of the tunnel! I am dreading treatment #2 and going through all this all over again.
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(((((Hugs)))) Christina. The worst SE for me is still diarrhea got a new script now, I think it may work. Keeping fingers crossed. Glad you are doing a bit better. Much love, small SEs
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today is 13. hair is trying to shed but very few at a time.
i have to confess;i feel guilty.
why? cuz i feel good today!
hoping to get to church tomorrow finally-it's been one issue after another since we moved here.
then monday is tx#2
still acting like a slug tho! watched Bullitt-gosh i love the cars of the 50's and 60's!!!
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Hi all, I am only on day 4 of my first tx and have been taking the claritan since 2 days before the shot and so far I haven't had any se accept tired from no sleep and lots of hot flashes from the steroids and constipation. I too am wondering tomorrow if I will come crashing down since today is the last day for my steroids and the cumulative se after several treatments, I'm already wondering how I'm going to make it for so long and the crappy se haven't even begun for me yet.
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Lumpy, Don't feel guilty!Feel happy and we are happy With you!!!!!! I LOVE good news. Makes me feel hope, so ENJOY.
My new med makes me feel so much better, went out to dinner with family. Ate soup, baked potato and bite of steak. I still feel good 4hours later, I wad hungry. I am enjoying it, so you better too!!!! Much love!0 -
JAG, hang in there. And don't plan on trouble. Maybe you won't have too much. Take it as it comes. Much love AND small SEs.
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Hi all. :-)
Just got back from a long Sunday lunch with some wonderfully supportive friends. I'll be packing a 'chemo' bag soon, to take with me tomorrow. Yes, only one sleep left now!
I hope I can sleep tonight, I get so anxious before starting new things. Reading everybody's posts here has alleviated some of my worries though.
Firstcall, Why do you not feel like you fit in here?
Mthrdee, Some people really need to learn some sensitivity! I hope that you fly through your chemo treatments.
Reminds me a little of my BIL's wife, who has no ability to empathise. On learning that I had big decisions to make about my cancer / breasts, she decided to tell me what SHE would do in my situation: "I would just lop it off!" She punctuated this exclamation with a big swiping motion of her arm across her chest.
Scary thing was, she couldn't understand afterwards why I might have been upset by that glib statement.
Anyway, that's it for me, until after treatment 1 is done.
(((hugs))) to everyone, and big smiles to your support crew.
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Galena- good luck tomorrow/today! you will do fine. Much love and small SEs
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It always surprises me when sober, mentally well people don't bother to think about what they say before it vomits out of their mouths. You have to try to think of them as having some kind of mental disorder and not let their negativity affect you. This is very hard in our shaky emotional state right now. Maybe because we are not breaking down in front of them they think its no big deal to us.
My mother fell and broke her wrist a week ago and called to tell me about it. She was so happy when she said to me, "Sorry to steal some of your thunder, but this is terrible!" I laughed at her and said she could have all of the thunder and attention and that I would gladly trade places with her. Now, every time I talk to her she asks how I am and then says "OH, me too, we just have to both deal with this pain." If I tell her I'm have a good day she says, "Oh, lucky you!" Ha-ha!
She also asks me every time(I mean every time!) I talk to her if I am sure I want to bother with breast reconstruction when she knows that I'm already doing it and have the TE's. She says why bother at your age? I'm 54. I know that she means well, but could she think about what she says? Oh well, the good thing is that she lives 7 hrs from me and was insisting on coming to stay for a month(not happening) to "help me" during chemo. But with the broken wrist, she can't come now. I believe that God had mercy on me! Ok, I know this sounds mean, but thanks for letting me get that out!
Enough ranting! Even in the best of circumstances, minimal SE's, etc. this is a frightening, emotional ride and we have to insulate ouselves and concentrate on our inner strength and healing. All of the others will have to take care of themselves for a bit.
love and stregth to all,
Judy
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ok, fatigue?? needs to be called something else, OMG, I have never slept so much and felt so dang tired, I wake up hungry, eat then sleep, repeat, I may have an hour or 2 before I crash again. I already have hot flashes, even at night, but the first night after tx was horrible. they were more intense, so I slept in the spare room with the fan on and it was perfect had this tunnel effect from the fan. This only happened the first night, now back to my regular flashes.
been taking the clariton, since 2 days before tx, hoiw long after neulasta shot do I continue?? well been up 10 minutes now and am starving guess I should eat so I can go back to sleep
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moonflwr - thanks for the hugs. I hope the diarrhea gets better. I had that for several days but they increased my protonix and that helped. Made me think hard about how my bathroom could be more comfortable too...
Jag - who knows? enjoy the good days when you have them. For me, the third day after treatment was rough, and so was fifth and sixth. Then it started getting better. Everyone is different though. It is so hard to not know what to expect!
galena - GOOD LUCK TOMORROW!!! YOU CAN DO IT!!!
jap62- Sorry you are so exhausted. Do what your body says, if you are tired then sleep. Glad to hear you are remembering and able to eat. I know I got nauseous if I did not eat at all. Can't comment on the claritan, I did not use it. I only had bone pain for a couple of days so I'm glad I didn't bother with it. I have enough pills to take.
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Day 3 after tx #2, feeling not to bad, so far knowing what to look for and expect seems to help me. I am staying on top of it with keeping down small meals, the claritin D seems to be helping the bone pain better this time. For me I really think that the 2nd time isn't as bad because I have a much better idea of what to expect. Tired alot, I sleept about an hour at a time, then get up for about 10-15 minutes during the night so not alot of deep solid sleep, we'll see how that works out today.
I find alot of comfort from all the posts here even if I don't respond to often. Thank you all so much for your honest and open sharing.
Marlene
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So far my SE is jut being tired. I haven't been able to sleep at night without going to the bathroom.
I have been taking Claritin at night to help with the leg pain. I can always tell when they are stopping cause I start getting anties and uncomfortable.0 -
galena
Thinking of you today!! I hope you were able to sleep. I know it's hard between being anxious and the steroids.
Judy
Ah Moms, especially elderly ones. I hate to say it but "someone" did help you, as much as love 'em, having her "help" at this time may have just added to your stress. My 84 year old Mom has always had swelling in one ankle since she badly sprained in her 40's. Of course is was swollen and she wanted to make sure the doctor looked at it and I don't blame her. Between my SIL and I we kind of split her appointments. She has always preferred me going with her however because I'm pretty vocal in a nice way with questions and push back alot with her somewhat burned out doctor. I know you all will say, find another Doctor. Problem is in Ontario if you have a long term GP, unless they're leaving there practice its very hard to find a good one that's taking on new patients. I've been taking myself to the appointments virtually since about age 13. She wanted me to come last week, I had to tell her now because the last place I want to or need to be around is sick people. She doesn't quite get it. I still look fine?? So my brother takes her. I follow up with her so see what the doctor said. Guess what, the swelling has gone LOL! Love her but I know she secretly loves the attention she gets even with minor ailments. I have alot more examples too but you get the drift. Before you start feeling to sorry for her, she lives in a lovely apartment, has a great income, I have arranged cleaners, cook for her, got her medical assist alarm, my sister does her laundry, my loaded brother gives her a monthly stipend and she gets visitors on a daily basis and gets out of the house everyday weather permitting.
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Hi everyone, chemo was ok on Friday apart from thinking I was having a heart attack and having to stop till my heart rate was ok. My cooling cap hurt like shit. Today my arm is infected so spent 3 hrs in walk In centre. Must have been fifty people and most were crying babies and kids. Got loads of drugs so I'm hoping it will get better soon.
Hey on a good note feeling ok and no pain today but waiting for tomorrow. I'm not going to work tomorrow as my arm is the one which I use the mouse.0 -
Jap62, take the Claritin for at least 5 days post-chemo.
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Greetings everyone! One week ago yesterday was my first treatment. It was a rough week, but today I feel pretty good.
Moonflwr912 - Actually you (speaking collectively of our group) have been good to me. I think I'm overly sensitive in this regard.
Myleftboob -Yes the Neulesta shot carries a whallop doesn't it. The bone pain was incredible. I do plan to try the Claritin next go around. I'm I remembering it right, you didn't take Claritin first treatment, but also plan to take it this time. I would be interested to know how that works for your bone pain. I plan to take it this time.
Galena_79 - you asked why I feel I don't fit in here....You know I've been asking myself that. And again, I think its me...not the group. Its hard for me to think of myself as one of the girls. I appreciate each of you. You're my sisters in this adventure.
Today is Sunday. I went to church, but I didn't stay long. Its flu season, and I noticed many coughing, and I just wasn't comfortable lingering there. I decided that it would be best to just stay home and read the scriptures in solitude. I feel the best I have since I started this, and I don't want to catch something if I can help it.
To those having treatment this week, may you have minimal SE.0 -
firstcall, I started clariton 2 days before my first tx and have had no pain from the neuslta shot, so I plan to continue with it. I too missed church today only because I couldn't seem to stay awake, feel more like myself right now.
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First Call, well, then, you just have to GET OVER IT! LOL- Its just the shock of thinking you have BC - didn't you know you are always the diffuclt one! LOL! And I did not take claritin this time either- and my onco nurse is wanting to know if it makes a difference next time. Also I didn't even try to go to church- there is a horrible nasty flu bug going around here, people are throwing up all over- don't need that! LOL I just had 8 hours without a BM for the first time since my TX. YAY!!! the new med is working.
MLB- sounds like you mom loves the attention, tell her you'd trtade her any day, perhaps it will hit her. (of course, you could tell here your funeral plans if you want- wonder if she'd think twice then?) My daughter had to write her funeral plans for a class- that was hard to read even if it wasn't for "real" .
Ali- hope you arm is getting better.
Galena- I am glad the SEs are small. Japhope you are doing good too. LisaK and MK- I glad you are both feeling wel. To everyone else - Much Love and small SEs.
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Mooonflwr912
Glad that taps been turned off for you. Although I appreciated your offer yesterday LOL! Almost spit out my water laughing when I read that.
Your daughter had WHAT assignment for a class. OMG how morbid is that?! I remember taking a life skills class in HS where we had to find a job, rent and apartment, buy a car etc. But funeral planning was not part of it.
Re my Mom. Well she would have no problem talking about my funeral plans, we're Irish after all. You know totally fatalist. Wouldn't faze her.Although saying I would trade you would LOL!
I am so taking Clariton next go round!! Totally paranoid about taking percoset long term. They work beautifully but if a non narcotic can work, why not. Like I said on a prior post, just imagine getting trough all of this only to have a nasty little pain pill addiction, no thank you.
Ali
Are ports just not the norm in the UK? I would have though our systems were so similar in protocol (Canada). I did find the needle stick a bit whoa for a split 2nd (never have trouble with IV's) but I'm still glad I got it..
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My heart goes out to all of you who are going through so many difficult side effects. At this point, I feel somewhat guilty also admitting that overall I feel really good. Besides that first evening nothing really strikes me as particularly rough. So part of me is waiting for the shoe to drop, but most of me is rejoicing in where I am right now.
The biggest thing I have noticed is that I will get this feeling of fatigue. I can't really put my finger on how to explain it because I try to liken it to past experiences: childbirth, c-section, acl reconstruction surgery, even depression and can't make a solid connection. I just know when I was in Kohls last night that I had this feeling that I needed to sit down -- not dizzy, not lightheaded, just needed to sit and wait to regain something. And as there were no chairs handy I actually found this little underspot in the girls' department and just sat there and decided which items I would buy and which I wouldn't. And then the tired feeling passed after a while and I was able to get up and continue shopping. Even tried on some bathing suits. It took me longer to do that but part of that is wiggling in and out with my left arm which still has the axillary web syndrome which will be addressed in PT going forward.
Was wide awake last night -- early this morning. I think I might have had steroid rush or something like that from 3:30 am to 6:30 am. Got a lot done but knew that I would be tired at some point today.
The other side effect that I have noticed is my fingernails being extremely brittle. I thought from reading on here that that was a SE of the T part of ACT, but evidently the AC has it in for me in that department ... unless it is a SE of one of the other meds or steroids. And of course since my eating habits changed a bit I think I need to get back to drinking a lot more milk which I always do and love.
Not certain if I wrote that I actually got out and had a RUN on Saturday - outside! The Lord has been gracious and overabundant in granting me this because it truly is something that has an effect on my physical, emotional, mental, and spiritual health. Did go to church today and was thankful that I was able to do that too.
Today we celebrated my husband's birthday. It is tomorrow, but our middle son has three exams on Tuesday so he was able to come home on Saturday afternoon and celebrate today and then my husband drove him back down to the campus late this afternoon. We had a nice dinner out and laughed a LOT and the day has just turned out perfect.
So I share all of this not to rub salt in any wound or to brag or anything like that. I know that any day now I could be on here letting you know that my bones ache, that I've caught an infection, or that some strange SE has surfaced. But for tonight ... that is not the case! Big MIracle!
I love you all ...pray for you daily and have you in my thoughts and on my mind.
Love,
Diana
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Dltnhm, you said it all, "for tonight, that is the case ." Xactly, that is all we can do. It is enough.
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Hi all - this was my first weekend without hair and I developed a new mantra. It is not my job to make you comfortable with my cancer. The reality is when I put it in that light, those that love me will love me no matter what. Those that don't know me might sneak a double take, but basically get over it in seconds. The hair thing is only in my head and only if I let it be. I had a great weekend
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Hi: i am glad to hear success stories. i had my first chemo treatment on feb 15. i had a positive attitude while being served the chemicals. but it was really tiring afterwards specially since i had an allergic reaction to the steroids..(hives) and they immediately gave me benadryl. i was not able to swallow properly for two days. and when i got the shot for increasing my white cell counts that did slow me down. i was lucky of not getting sick afterwards. but the smell of the chemical is unbearable to me so i spray alot to counteract it. on the 8th day i did have a burning sensation from my stomach up to my throat, and on that day i started losing my voice and 2 days later i could barely speak. i guess i do need to drink plenty of water to counter act it. i have been working nonstop and Thank God that i have been able to without wavering my belief in him and his healing power. in 3 days from now i will get my second treatment. i still have not lost any of my hair. i am glad i found this community and i better start reading the past posting. i know together we can get through this and thanks for listening.
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Hi diana: it is always good to hear good news specially the ones that are able to bear chemo with no side effects. i hope you do not have any. but lets remind each other to drink plenty of water to cleanse our body from the chemicals.. bye
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last summer, as a student in a Psychology of Death and Dying Class, i had to write a letter to be read at my funeral AND plan my funeral. it was a strange but cathartic assignment-and was pre dx....so--i have brushed them off and made a few slight changes and printed them out to put in a notebook for when it is my time...my kids know where to find this. i have a few strange music and verse requests and i intend to be cremated so i want them to know this.
of course, i don't plan on anyone implementing any of this for a very long time-my maternal gramma just turned 94!!!!!!
firstcall: is it that you shouldn't be here cuz you shouldn't have cancer??? or that we are all women? or that you are "in the medicine biz"? maybe you aren't used to sharing personal "stuff"? those would all be valid reasons. i truly hope that your comfort level increases.
we ended up not going to church either- i was up too long last nite with the runs and felt that i didn't want to venture far as well as the germs that are going around. also; our apt complex peers decided to party til 3 am-loud and screamy and stuff...
ok i'm gonna share some TMI; today is day 14 and my hair is shedding a teensy but i have lost almost all in the nether regions. maybe i'll just do everything backwards !
i'm reading Greg Anderson's Breast Cancer 50 Essential Things You Can Do. interesting read-some very wonderful points of info. chapters are short so easy to read while waiting for something.
my tx is at 9:45 tomorrow so a 90 minute delay from last time...
sending positive vibes
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