Starting Chemo, November 2013 Group
Comments
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Well it is day 12 for me and i started losing hair last night.Each time I run my fingers through it. I have prepared with hats and 2 wigs(not sure if I will wear). Went back to work on day 10( dental hygienist) and it has been fine. I ended up with a bladder infection and am on levaquin. So my white count was high today 18.5 and my plastic surgeon did not want to do my fill did not want to risk anything, guess I can't blame him, the tissue expansion can wait. All in all I feel great, I have been out Christmas shopping an pretty much back to my normal life since day 8. I hope next round I don't have the big D as bad, that was horrible but lomitil helped. Amazon my thoughts are with you. Paulette I live on the east coast of Florida and the weather is windy and cooling off finally. Hope everyone has a wonderful,side effect free Thanksgiving! -
Thank you! I will check them out! Thinking about going ahead and letting my husband buzz my head this weekend, well ahead of when the Great Fallout should begin, just so I don't have to deal with whatever aggravations/emotions that might bring. Better to have it be MY choice in MY control. (I actually started wearing a seatbelt in my car all the time a full year before the actual seatbelt law came into effect---I'm THAT much of a control freak. I wanted it to be MY decision, and not cuz I "had to". How funny is that?)
Edited to add: Audra: Just spent the last hour checking out hats with heart, and they have stuff I LOVE! Thank you so much for directing me there. They even have stuff I love that's on clearance....yippee!! -
Amazonwarrior1, I hope they get to the bottom of this soon for you! I'm right with everyone else here sending you good, healing vibes (and extra intelligence to your doctors)!
Lisa137, you are very, very wise. Thank you. The "why not me" absolutely was a perspective I needed to hear. There's one thing my aunt told me that I think of everyday. (She lost her husband suddenly in the 1970s and had figure out how to raise four teenage boys and run a company she'd never been involved in.) "Sometimes you need a shock to recalibrate." -
inks, I also am from upstate New York. I live in the Albany, Saratoga area. Nasty, rainy here today.
Amazon, I hope they get you out of there soon. Feel better!
Looking forward to seeing family on Thursday and hope to stay well until Monday when I get AC #2. -
Amazon - sending good vibes to you, get out of the hospital soon!
Lisa - I got some inexpensive pre tied bandanas from http://www.doubleheaderusa.com/results.asp?catid=5. they start about $12 and shipping is free, I got scarf/hat liners from them too since it's cold where I am.
Second AC done today. The nurse poked me once and could not get a vein, second one on the hand worked and everything was OK after that. We saw 5 cars in ditches on our way there, people just don't know how to drive when the first snow comes.
smrlvr - I am near Rochester NY and drive 1 hour to the hospital. -
Thank you so much for your support. It is another blessing in my life.
My temperature has been spiking up to almost 39.9 C. ( 103.82 F)
The doctor that saw me this afternoon ordered another set of antibiotics.
I just pray it's going to work. I really hate being in hospital. -
Amazon, so sorry. Grrrrrr. I hope they let you out soon: hospital felt like jail to me last week. Lisa, thank you. I've been starting to get anxiety attacks, who knows why now. Need your perspective. Also, Etsy (look under accessories) has many fun and unique hats and head covers.
Just picked my son up from college. He has a raging nasty cold. This is going to be interesting, having to treat him as a contaminant. Gloves, masks, Clorox wipes...not going to be a very huggy family together time.
Day 15: when I run my fingers through my hair I get about 3 loose ones each time. Dunno if I'll be long and blonde tomorrow or still short and brown. Time will tell. This feels like a science experiment. Paulette you rock your chrome dome.
I'm in the San Francisco area. I'm lucky in that there are a million resources right here. I cannot imagine what a strain it would be to have to drive long distances in inclement weather to my doctors. I'm spoiled! -
I just got back from the grocery store where I ran into two now-acquaintances, earlier good friends. When I saw them and realized they hadn't seen me yet, I ducked down another aisle so I wouldn't have to talk to them and tell them I have cancer. Why did I think that?!? Probably because earlier on in this journey, I felt the need to tell EVERYONE. And I mean everyone, right down to the cashier in Trader Joe's, and then the clerk I'd never met who took my groceries to the car because I couldn't lift them and I thought she deserved the whole story since she'd heard me talking to the cashier. AHHH! So, I stood in the grocery store this morning, after having ditched people I like, and talked myself into to hunting them down and seeing where the conversation went. Of course, it was very easy for it to never come up. But then I found myself totally distracted from what they were saying because I was obsessing about whether they could "tell." Could they see my stubbly hairline at my sideburns and temples peeking out from the edge of my wig? Were my foam inserts even?
It won't always be like this, right? -
Oh gosh, Bec, I don't think it will always be like that, no. I can see myself doing that maybe--shying away from people sometimes; I even hesitated before I went to my own family's house for the first time after my BMX, but that was mostly because I was having anxiety issues at the time and didn't know how their reaction would make ME react.
For everyone else, I told a few key people (including my facebook friends, and everyone on that list really IS a friend,) and told them to pass the word so I didn't have to. So now I just mostly assume people already know, and don't worry about it.
Just keep in mind that it's almost a 100% chance that you are NOT the only person they know that has cancer. It's hardly even unusual these days....stunning thought, but true.
I also always think about how just a few months ago, when I saw someone who I'd recently found out had cancer, I wouldn't quite know what to say.....and so now I totally understand when THEY don't quite know what to say to me, either. Funny, isn't it? -
Veronica37-
So glad for you that you are back to work at day 10! Did you get a neulasta shot?
I just got my 2 week bloodwork and my wbc only went from a 2 to a 2.4??? really?
I had showered, make up and done hair )that still is stuck on head) hoping to go to Costco afterward with my husband...
So I got told that I might have to push back next week chemo if not up by then..and it might delay port as well..
and then I got to sit in the car while he went in the crowded Costco...
DEPRESSING! -
Audra- yes I did get the neulasta shot on day 2, it was a scheduled part of my treatment. I also have a port and the placement went fine just bruising and swelling, it was painful the second day but no biggie after that.
I have lost probably half a head of hair today, made it to the store before it got to bad and we will be shaving our heads together tonight, oh boy! -
Thanks, Lisa. My mom gets so mad that some of my cousins haven't reached out to me. I keep telling her that just a few months ago, I was that person who didn't know what to say and was so afraid of saying the wrong thing that I said nothing. I get it. On the bright side, my grocery store peeps didn't look at me like I had my wig on upside down, so I guess it really is up to me with whom I share!
Thank you for continuing to share your wisdom! -
Yeah, you know, almost all my friends and families, and those of my husband's, have reached out to me, except for ONE couple, and I'm trying to not be hurt or whatever by that. The guy in question is someone who used to be one of my very closest friends, and after my husband and I got together, they also became very close friends. Later, when the friend married his wife,, my husband and I became good friends with her as well. We've grown apart a little over the past few years---for different reasons, but no "falling out" or anything like that, and yet, I've heard nothing from either of them. Makes me a little sad. But... I am me,and the guy's wife's birthday is coming up in a few days. I plan to wish her the GREATEST BIRTHDAY EVER! lol. Then we'll see. -
Hi everyone~want to quickly update you and provide some comfort, too (if I can). Had my first T&C yesterday, which went very well. No acute allergic reaction to the Taxotere. Cytoxan was alright. Chemo nurse accessed my still sore port with icing only 'cause there was another oversight with medications. A little nausea with both chemo administrations but all-in-all, the First Round went well!
Also met yesterday (pre-chemo) with Cesar (my research nurse) and Audrey, "my" Oncology Nurse Practitioner who works with the Oncologists in this practice. She did a great job listening to my concerns and fears...prescribed a boat-load of required and preventative meds...Compazine, Vicodin, Ativan, Lanacaine Cream (for port next time), more Dexamethasone (pre-post chemo next time), Laritidine (Claritin), Zantac, was already taking Prilosec, Pepto-Bismol, etc, etc,
Just got back from the hospital where I received my Neulasta shot. The nurse, Patty was very good about covering the anticipatory "bone pain" and how to "not be afraid to use all meds, etc."
Aloxi, a relatively new, long-acting anti-nausea drug was given via my port prior to chemo and I swear, it is helping a lot!!!
Took an Ativan for nausea/sleep last night and did well. Some heart-burn, some intermittent nausea, some chills/shakes (from Decadron) and a bit of diarrhea...but overall, I had a good day yesterday.
Today was not as good, mostly because of a fight with my husband. Didn't help matters at all. Very very tired, so I woke late, took a nap a few hours afterward (prior to hospital visit). Have little appetite, nausea and loads of FATIGUE. My concentration is off, so forgive me if this post is spotty. Handwriting is a mess :0(
(((Amazon)))-please hang in there...I know they will "get it" and find out what you need to take the infection away and bring the fever down...prayers to you. Have hope.
(((Lisa)))-I enjoy reading your posts as they are so forthright and positive. Your attitude is infectious. Hope your energy rubs off on me!
(((Wrenn)))-WTG...happy you have done so well so far. There will be "hiccups," so I am told by my treatment team...but I hope & pray you continue to hang steady. I love your slow 'n steady, calming energy!
(((Melrose)))-your tips, compassion and advice have helped me soooo much! Always have you in my thoughts & prayers.
(((Bec 65)))-I felt relieved once I made the big decision to buzz my head...did it on my own on Sunday night...down to 1/4" or so. Depending on how "bald" I get, I may purchase a cheap-o clipper to buzz down near bald and to keep the little downy head hairs at bay as they grow in. Best wishes to you.
Everyone...remain strong and have the day you want to have tomorrow...festive or festively quiet...you are all in my thoughts and prayers. I will write more when I am less tired :0)
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Isn't getting chemo like being in a boxing match? You go in there to fight. You are going to get punched. You know it's going to hurt, but you go anyway, because it's your chance to win over your opponent - bc.
Round one, round two, round...
Keep on fighting. -
Bec, I have avoided people in the grocery store, as well. I Think it depends on the day and whether or not I feel like talking about my situation. It also depends on the person. The way I look at it, it wasn't our choice to get bc, but we can control who we choose to share news with.
Didn't do too much today because I am having a houseful,tomorrow. Have a great day, everyone. -
tonilee...you are amazing!! Not only did you just have chemo & are dealing with the fall out from that....and write intelligibly about it!! But you also were able to comment to numerous people by name and give support to them. I so admire your strength!!! You go girl!!
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@tonilee I'm pretty sure I got Aloxi in my infusion also, and it's probably exactly why I have done so well the past couple of days. Might have just overdone it by mindlessly overeating a bit on mac and cheese while watching tv, but we'll have to see.... If so, only my self to blame. Modern medicine can only do so much when it comes to my mac and cheese addiction. :P
Also, better hope that if my energy rubs off on you, it's my *mental* energy and not my physical (or lack thereof) energy. Not that I'm much less energetic than I was pre-cancer, mind you... but I do tend to take my time.
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We have heard here about a number of husbands who are offering tremendous support, bless their hearts.
I'd like to give a shout out to those women who are facing this cancer either without a spouse, or with a spouse who is either not supportive or who has their own needs which prevent them being supportive. In a group this large, no doubt we have some folks in that situation -- but we are much less likely to hear those stories.
I thought for a while that there couldn't be anything worse than my situation -- diagnosed 3 weeks after my husband's death, after more than 3 months this summer caring for him under hospice care. Going for health care services really highlights his absence.
But now I have heard of a couple of situations that I suspect are even harder to handle. I know of a woman dealing with several complications in her care. The stress got to her husband, who had been sober for quite a while but has now fallen off the wagon. He can't be there to support her, she can't be there to support him.
Months ago, while my husband was getting a bone infusion, he overheard a woman a few chairs away telling that her husband simply could not face her cancer diagnosis. He hasn't divorced her, but he is never home, always finding somewhere else to be when not working.
For those walking these difficult paths, I hope and pray that you have others in your support system -- or at least that we can help support you here.
Ellen -
Ellen- so sorry about your husband. Mine is being a much more sturdy rock than I would have thought. I sure hope you have someone to help hold you when you need it.
My sisters are making me crazy. They don't understand that I'm better off alone so I can sleep when I need or do something if I feel up to it. My husband (an only child) doesn't get it. My sisters and I might not spend hours on the phone, or go shopping every week, or even really like each other all that much. But we're sisters, and hurt one-hurt all. Always wanted to be an only child, until I married one and realized all the things he missed out on. So much better to have a sister or three to blame something on LOL.
Had a pretty easy day. Fuzzy head and headache gone. A little queasy, but the good drugs are handling that. At first I really worried about the chemo before the surgery. Like something was worse than they were saying. Now, after hearing the infection stories, I'm really glad I'm doing this backwards.
Amazon, get better, go home, have wine. Well, the wine may not really help, but you won't care. -
Ellen, I am sorry you are doing this on your own. The timing is horrible no matter how hard others have it. I have been on my own for many years and now prefer it that way but it takes time to adapt to that and it is all so new for you and so unfair.
My daughter lives nearby but right now my bone pain ( not touched with narcotics) and generally feeling really crappy make me want to just sleep. Started the day in good shape. Got whacked bt noon
How long does the bone pain last? -
Ellen: No kidding. It seems to happen so much more often than we'd like to think; people going through these situations alone when they wouldn't have imagined it to be that way. Saw it work the other way recently too; a male friend who was hurt really badly in a car accident found that his soon-to-be-wife could not handle the reality of the "new him," and just walked away.
Sometimes I think that's why we watch movies and tv shows and read books; because sometimes, at least, in those, the story comes to a satisfying end, the way we either wanted, or at least expected, it to end.
Life often doesn't.
My heart goes out to those who are doing this alone, or even worse, those who feel like they are doing it alone when there should be someone there to help. -
@Amazon : funny, I haven't thought of it like a boxing match, but I suppose in some ways it is.
For me, I feel like the day I agreed to my first appointment with the surgeon was the day I sat down on the Cancer Conveyer Belt, and since then, I've just been riding to wherever it takes me. Or maybe like a seat in a fun house, only not very fun. Sometimes it rides along smoothly, other times things pop out of nowhere and scare me or try to hurt me, other times it takes unexpected turns to the left when I expected it to go to the right, and all I can do is try and hang on for dear life, fight off the bad things as they come, roll with the unexpected changes, and hope that the end of the ride is a good one. -
lisa137 - here is a scarf link, these are nice because they are cotton so they don't slip off:
http://www.anokhiusa.com/all_scarves/index.html
I believe you can also get a free scarf from these folks:
http://www.goodwishesscarves.org/
wren - it is hard to say whether the bone pain is coming from the Taxotere or the Neulasta, it is a SE of both - but, I can say that the first time is usually the worst. Next time take the Claritin - maybe try a warm bath?
ellen - so sorry for your loss - your grief compounded by now dealing with your own illness. A hug to you!
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Thank you SpecialK. I took the claritin today but too late. I then took a narcotic I had from post surgery and it did nothing. I am hoping it doesn't last several days. Thank you for responding and Happy Thanksgiving. I am very thankful this year formyour generous help to us. -
wrenn - you are sweet and I am so sorry you are feeling pain. The Claritin definitely has to be taken prior to the injection. I remembered for the first two injections, then forgot for the third one, took it 30 minutes later, and had more pain than I did for the first two, so my anecdotal experience is that you have to take it before! It is tough when the narcotics don't work on pain - sometimes holistic efforts are helpful - that was why I recommended the tub. Be prepared to feel a bit under for a couple of days, but definitely notify your oncologist if you feel the pain is too much.
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Thanks Special, I will try to hot water treatment. I still have to be careful with wound dressing but can soak my legs which is the only place the bone pain is showing. Everything else is ok.....Hey universe don't get me for saying that. -
Amazon, I hope they find the right drug soon. It took awhile for them to find the one that finally fixed my infection.
Ellen, I'm so sorry about your husband. I'm on my own but have been divorced 10+ years and very used to it. Actually prefer it in some ways but at the beginning it was SO hard. Big hugs to you and be sure to reach out. My sister and girlfriends are bringing me through this.
Wrenn, I hope the bone pain eases soon. Thanks for your last PM, too.
What still gets me about the BC diagnosis is how much it permanently alters the rest of your life in so many ways. Just strange. But had a great days with my kids and am savoring these days and hours of good health. -
Ellen, I cannot imagine now difficult facing this alone would be, especially while still mourning your husband you were forced to mourn your own health. Sending blessings and good thoughts your way.
Wrenn, so sorry you're struggling with pain. This is one hard journey.
Amazon, are you still stuck in hospital? So sorry. Here's hoping its "only" taxotere pain and NOT an infection. -
Thanks Pat and Quirky, I hope you have a good Thanksgiving.
I am thankful to all of you on the forum and wish you the best. We will get through it. xo
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