Anyone starting chemo August 2016?
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Dara, I'm in Colorado. Where are you?
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Hi everyone! Thank you all for checking up on me, what a sweet surprise! 💜
Welcome to all the new ladies here! I'll go back about 10 pages to get up to date on everyone. Busy, busy place 😳
To make a long story short I was given an antiviral medication to fight cold sores and the SEs make me sicker than the chemo drugs do. I talked with my DH and he told me to stop taking it. Besides, I've been taking it for 2 weeks now and I'm still getting the cold sores. Sooo, do I take it, feel ill all the time and get cold sores? OR do I stop taking it, feel better and still get cold sores? I'll take my chances and atop taking it and see what happens.
They finally have my chemo treatments schedule worked out. All due to my MO wanting the long weekend off, I don't blame him but a warning would have been nice! My AC has been moved to every other Tuesday for the last two infusions, then I'll go back to every Friday for the 12 doses of Taxol. I told them to stop messing with my life and get this taken care of in a professional manner. It's my life not their's!
My appointments have pretty much slowed to a trickle, thank goodness! I mean 20 appointments in 4 weeks is a bit much!
I'm reading that a lot of you ladies take your steroids in a pill form? Mine is pumped into me before my AC infusion starts but it could be due to the different chemo treatments to follow? Who knows 😊
As for my blood work, it's done as soon as I get to the chemo center. I can go get breakfast or do some shopping for about 2 hours while we're waiting on the results. I don't understand why they wouldn't do any blood work at all?! I was told the amount of chemo drugs given would reflect off of my blood work? Scary stuff!
I'm going to head back to my recliner and my blankie, I hope to be back to my old self in a few days, keeping my fingers crossed anyway!
Hugs,Love and Prayers to All!
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Welcome back Lori! Those cold sores are miserable! I had them after my first treatment, but so far they haven't come back. I can tell my taste buds are off again today, still have a little taste, but everything is dull if that makes sense. My MO also gave me two prescription mouthwashes for thrush and canker sores. Both taste putrid!
I take steroids in pill form the day before, day of, and day after infusion, plus they give me a bag before I start my taxotere. Since I reacted this time, I've been told they will also give me benadryl and pepsin before treatment next time.
Seq, I'm in So Ca. We lived in CO for about 5 years and my daughter was born in Denver. We moved to Denver and expected "Rocky Mountain High" which Denver wasn't. We then moved up to a little town called Conifer and loved it! My DH wound up traveling a lot through the western slopes and after 5 years, we came back to CA to be closer to family. CO was a great experience.
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Dara, A lot of people have way different expectations of Colorado than what it actually is. Many people don't realize that a large part of the state is flat and dry and ugly. Only a small portion is mountains. My parents live on the western slope. Too hot over there for me! We are about an hour east of the mountains about 50 miles north of Denver.
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WenchLori, I get steroids IV before the chemotherapy drugs and then pills for three days, starting the day after, two pills a day. I usually then stop all meds once my steroids are done. I'm feeling so close to normal, which can only mean the next infusion is around the corner. Boo.
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Hi ladies ... I have had a tired but good day. When my pod went off I felt nauseated so I hurried in for nausea meds but realized I took a full anxiety pill so along with the nausea pill I should rest well tonight.
On Monday when I finally made the decision to shave the head that evening I got kind of sad then a coworker txt You Got This Girl ... I'm sure she meant it for good but it hit my sad button and just had a good cry ... Just me and the pug! Then today my sister in law emails me "how's chemo treating you?" 😱 WTH Oh just spiffy!! Or tonight I tell my mom my pod medicine made me sick and she said that happened with her knee once & it goes away 😳 Hmmmm?? Another friend emails me an article on how Triple Negative breast cancer TNBC has a high rate of resisting the chemo ... I wonder was that to make me feel better??
WLori glad you checked in and hope you enjoy your recliner ... Rest well friends 😘0 -
Hi everyone,
It's been a long time since my last post. Been struggling. My second infusion really hit me hard. My MO said that it will likely get harder as I get further into treatment. He said it will take longer each time to bounce back. I don't like to think about that, I'll just deal with each day as it comes I guess. I've had a hard time with bone and joint pain, I'm guessing from the neulasta? Now my feet hurt so bad I can only stand for short periods of time. Seems like the bone and joint pain goes away a few days after my pod injects, but the foot pain is constant. Weird. Anyone else having issues with your feet? I too am having the dreadful constipation problems. I'm using Miralax mostly. I have some senecot too but haven't tried that yet. I've been sort of depressed I guess. Just gets hard watching everyone else living their normal lives and mine consists of doctors and poison and hair falling out all over the place and pain and sickness. You know? This is a tough road. Soooooo many people have said, chemo is tough but you can do it and then you'll be fine and you can put this behind you. I don't feel like I will ever be able to put this behind me. I feel like it's going to haunt me forever. I feel like I'll just be sitting around waiting for it to come back. I know that's super negative and I'm so sorry. I just needed to vent I guess. You ladies are the only people on the planet who really understand! On a brighter note, my MO did say that the Taxol portion of my treatment won't be as hard as the AC has been, so I was at least a little relieved to hear that. I've still got 2 more AC treatments to go before I start that one though.
My sister has been a huge help. She keeps giving me presents, little stuff, to make life more bearable. It's so kind. And she made me a ton of food for the freezer so I don't have to worry about dinner for at least a week!! I was blown away. She made me some potato soup that is SO GOOD! I couldn't shovel it in fast enough. It seems like the "comfort food" type stuff is what is tasting best to me. Casseroles and stuff. And fruit, ice cold fruit. I am loving watermelon and honeydew and cantaloupe. I could live off of just that I think. It's like candy, so good. I got some popsicles too, to help with getting those liquids in. I also got some gatorade, but I'm finding that it just tastes so salty its almost off putting, so I haven't drank much of that. Mostly, I just stick to water. I like it super cold, lots of ice. That is what is tasting best. Everything else tastes "different" so I haven't even been able to enjoy my sweet tea! It just tastes too different. I hope after chemo, that the things that taste different will go back to normal.
Have you ladies lost much weight? I've lost nearly 30 pounds since surgery 2 months ago. It's insane. I have it to spare, so that's not an issue, but still, that's alot. I'm just wondering if it's normal to lose so much? Sorry if that's too nosey. I don't mean to be rude or anything.
Again, I love reading everyone's posts. Even though I haven't posted very much, I feel like I'm really getting to know all of you and I love that everyone is so open and honest about what we are going through. It's helpful to hear the truth. I like to know what to expect and how to deal with it rather than the standard, "oh you'll be fine" "you can do this" "you got this" "just keep a positive attitude and you'll be fine." Really? You try chemo and see how positive YOU are! LOL, sorry I couldn't help that one. I would never actually say that to anyone. Just venting again.
I hope everyone has as good of a day as you can. Rest, rest, rest and drink, drink, drink! Thank you all for making my days a little brighter when I get to come on here and read your posts. I may not post much, but I read every single one.
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hi all,
So glad to have you and your words here to comfort.
Had my 4th and possibly final Gemzar Carbo treatment for the lung/liver/chest lymph infiltration today. This combo can be very painful and today it was hideous. My BFF goes with me to all of my medical appts, and she just held my non-infusion hand. Luckily the Gemzar infusion was over in 30 min. Went home and drank 2 quarts of water, and now on my third, after a 4 hour nap.
Cat scan and MO appt 2nd week of Sept so after Sunday, I should have 10 days of feeling fab.
Ended my work life today. My company has been awesome throughout and they've done unbelievable things to support me. Recently I mentioned on FB that I wanted to hang out on the beach with friends in my retirement, so the CEO rented a 3-bedroom house for me on Stinson Beach for a week in October! So, so amazing.
Thank you all for being here, and much love to you no matter what is happening.
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Good Morning
I haven't been posting much but read everyday. I love that this board is busy and lots of great info and reading.
Yesterday was one week after my first treatment and had to go have my blood checked. White blood cell count was very low so Dr. said I cannot return to work. I need to go home and stay away from people. Need to avoid germs. I'm a manager at a call center so of course I'm around tons of people and sick people. He said it usually goes back up on its own. Did a little research on foods to eat to help bring it up. Next Wednesday is treatment day, so they'll check my blood again to see if I can have treatment.
Just reading through these posts. I get aggravated at some of the comments made to me. I think people mean well and just don't know what to say. So many people think they know what they are talking about but have no idea. I didn't know lots about cancer until I was diagnosed. People will say you may not lose your hair not everyone does. Based on the treatment I'm getting, yes I will lose my hair. I was told that A/C on a scale of 1 to 10 is an 8 strength wise. I always thought chemo was chemo, I didn't know that there are different treatments based on type of cancer etc.
Yesterday when I was waiting for my blood test results, a lady randomly says, so what kinda cancer ya got? I said excuse me? I knew I heard her but who does that?? She goes on to tell me she has liver and some other kind. In the office where I go, you are just in a room with a bunch of other people getting your blood drawn. I really hate that. I don't want to see everyone else getting poked at, let alone people looking at me. I think as I get used to the routine, I won't care but some of the things they talk about, I just don't want to hear it! I forgot to put the numbing cream on my port but guess what? I didn't hurt
I was given information for groups to attend, but I really love these boards. I'm comfortable here. People check up on others. I'm comfortable saying how I feel. When no one gets what I'm talking about I can come here, because you do.
Wishing everyone a great day!!
Kathie
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I will be starting chemo next week and have been reading all of your posts on this board to see what I am in for. Needless to say I am SCARED! The doctor told me on Monday that 8 out of 10 find chemo to be easier than they anticipated. 2 out of 10 have horrible side effects. So afraid I will be one of the two. Some of you seem to be tolerating this well, others not. How much does age have to do with it? I'm not that old (54), have been healthy and no problems ever. My first of 4 AC infusions is next Friday. I have no idea what to expect. I was told how you react to the first one will be how you react to the rest, yet I am reading here that side effects get worse and last longer after each one. I don't even know what to believe anymore. I'm shaking in my boots and know that when I walk into the chemo center next week I am going to want to turn and run the other way. I sound like a broken record here because I have expressed all this before, but the reality hit me really hard last night. And the worst part is in 3 weeks I will have a bald head! This is torture!!
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djm, sounds like you are experiencing neuropathy in your feet. That's nerve damage that can be really painful. Let your MO know as there are meds that may help. For future treatments, people say to try to ice your feet to help with nerve problems. I've had just super short piercing needle feelings but then it goes away very quickly. Unfortunately, just one of our lovely SEs. Your sister sounds like an awesome cook. Especially that potato soup! I think carbs sound most appetizing to me. Problem is my taste buds aren't quite right so nothing has a lot of flavor.
Satti, what an incredible company you worked with, and also a tribute to what they thought of you as both an employee and friend! Your infusion sounds so challenging. Hope the pain of it is short. My sister lives in the bay area and Stinson has always been her favorite beach!
Kathie, do you get the neulasta pod or injection to help with the WBC? I had an option to get it or not but when my MO kept harping on how if I was around anyone and got sick, they'd have to put me in the hospital. I got the injection and when I went back in a week, my WBC had already rebounded to normal.
I have a friend who had bc 17 years ago, went through 2 rounds of chemo and rads and never lost her hair. I think that's pretty unusual though. I get taxotere which I believe is one of the ones that causes hair loss. My MO started out right away saying I'd lose my hair. About 10 days after my first infusion, I started "shedding" like crazy and finally gave up and buzzed my head on day 15. I admit that even after 45 yrs of marriage, I was really self conscious of my bald head around my husband, at least until he came home two days later with his own head buzzed! I just love him!
I'm really thinking this round of chemo I'm not having as many SEs as the first. I've been at least as tired as the first time, but so far, only mild aches and pains and no intense bone pain. Hope it keeps up! I'm working really hard to ward off any mouth issues also. Isn't watermelon the very best taste???? It's so cold and wet. A neighbor brought over a big tupperware bowl flu and I've devoured it.
Kz, I know what you mean about the comments. Sometimes I don't want everyone to be so positive in their responses. I just want them to say, yea, it totally SUCKS! And I hate when someone says, well, I never had that happen, you'll do fine. Everyone is so different, and it's irritating to feel they minimize SEs. I guess maybe I should check out the rant thread! lol.
Cali, so sorry about the hair, but sometimes a good cry is just what we need. It's not even the hair (but then again it is) it's just such a constant and visual reminder of what we're going through.
So thankful we all have each other here!!! Dara
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Darab - I did receive the neulesta shot the day after. He said sometimes it does happen. I had gone back work to work for a week.
Seq24 - I completely understand your feelings. Keep in mind everyone is different. Whatever side effects happen, you will get through them! A much as I hate hearing it myself all the time, stay strong minded and that your going to kick cancers ass! My two worse days were manageable. I was laying on the couch dying, I was laying on the couch resting. I was happy once the first was over. I was nervous going there but didn't freak out. I sat there and said, okay I got this. You are not alone by any means. We are all here for you.
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Morning Ladies! Love that I feel good to read the posts & encouraging words today. My first treatment it hit me Friday evening ....maybe not this time.
Seq24 ...we will all be here for you and I will be praying I need your date next week. For the head my friend who has been BC free for 2 years ...but unfortunately still hair free said she uses Sarna sensitive cream. It's in the cortisone type cream isle and it has a pump. I use it morning & night and it's soothing with no steroids or fragrance . I found at Target & Walmart. She Sid it just make wearing a wig more comfortable.
djm ... It is hard because sometimes we don't want to be tough & keep telling everyone everything is alright. ..it's not. But we all know it could be worse but in the constipated, diarrhea, sharp pains, achy all over, fever moment it seems the worst .... So we encourage each other as best we can. I can honestly say I haven't dropped one dang pound .... Nope not a one and I'm eating much less. My PA said the steroids might make me gain weight ...lovely fat and bawled 😬
Sensitivehrt ...I love the face ... I think I practice that one a lot lately
Adjclan.... I plan on using that ....hope you are lucky enough to say that naive line. I have always been a big sympathy fan when my teenagers would complain about something I always said ... Sucks to be you now I just say sucks to be me right now.
Sattipearl....so so sorry for the painful treatment 30 minutes can seem like hours. Your CEO is awesome I hope you enjoy every moment and show us pictures. I want to go to the coast so bad. We live near Pismo which I know being a So.Ca. Girl we use to make fun of the beaches up here but when it's all you have you want it...just didn't feel like the 3 hour drive on my good weekend last week.
Oh and DH comes home last night and says. ... Want to go to Vegas this weekend?? Considering at this point after my first treatment I just wanted to be able to drop my head on my pillow and rest when needed I thought he was funny ...or nutty... But he's the one telling everyone onthe phone "We're doing good" 🙄
I think as far as losing my hair & having my first treatment the antisipation was the worst.
Love & hugs to all 😘
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Hi, everyone-
Our members are the backbone of our community, and we are constantly striving to highlight your stories and share them with a broader audience (with your permission, of course!). One of the ways we are trying to do this is through video storytelling. We have an opportunity to highlight some of your stories, if you'd be willing to share them with us.
We're looking for members in the Los Angeles, San Francisco, or New York City areas who would be interested in sitting down for a video interview in the next couple of weeks. If you're in or near one of those cities, and would be willing to share your story for this video storytelling initiative, please send us a pm, and we can discuss the details.
As always, thank you for being a part of this community, we wouldn't be here without any of you.
The Mods0 -
caligirl, so funny about your husband and actually my 2 sons also. I hear Tom on the phone saying "we" are doing great! And I ran into my son's MIL and she was amazed that I am "same as usual"! My daughters are a little more realistic and all have been great taking turns coming to my infusions to help their Dad with my cold capping. That is another thing, I have all of my hair still so I really don't look sick. I told them from the beginning, I don't want you treating me any differently, dont start being really nice or anything! Guess they are just following directions! 🙄
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I just want to clarify something I said earlier. I was ranting about the things people say and how irritated I get. I just wanted y'all to know that I don't feel that way WHATSOEVER when anyone here says something like "we will get through this and put it behind us." I know that sounds like I am contradicting myself, but for whatever reason it doesn't bother me when anyone here says encouraging things. I actually feel encouraged when you do. I think it's because all of us here are actually dealing with the same problem where as those on the outside are not. And I think when the outsiders try to say encouraging things, it ends up coming across as if they are playing down what we are going through. I have no doubt that they don't really feel that way, but for whatever reason I end up taking it that way. I probably shouldn't have even said anything because I am having an emotional day and that is the wrong time to put anything in writing! Lol. So if anyone took what I said in a bad way, please let me apologize because I certainly did not mean it against anyone here whatsoever. I went back and re-read what I wrote and then I felt really bad thinking I may have offended someone. So, I just wanted to make myself a little bit more clear. I appreciate everyone's encouragement to me and to each other and I appreciate these boards very much. I don't know what I would do if I didn't have a place like this to come to.
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Caligirl How are you feeling today? Your chest feeling better? I had the same reaction on my first round. My doc added meds for yesterdays infusion, and thankfully it didn't happen again.
Annie-Glad to hear your SE are minimal and that baby girl is doing well. It's interesting about your ER/PR change in status. Mine has changed too. I was originally ER+ 8% and PR-. After my Oncotype of 30, I was ER- and PR+ but only slightly. Part of the reason I chose to do the chemo. Honestly feel like I'm closer to a TN, and was worried tamoxifen alone wouldn't do the job.
Dara-My veins suck, and they only have 1 arm to choose from. I drink close to 71 oz of water daily, trying to keep myself hydrated. They decided to be stubborn yesterday.
Wenchie-Hope you are getting some good rest and are doing better. Have you tried lysine for the cold sores? It's over the counter and works wonders on my cancer sores. I believe it's suppose to work on cold sores as well. My MO's nurse told me to start taking it when the cancer sores got bad. Maybe check with your doctor if you haven't tried before.
djm-welcome back. It's hard to keep up. I often just find myself lurking as well. Glad you have your sister. They are the best. Mine has taken me to both my infusions. She tried to make me laugh as they were trying to find a vein yesterday. Hope you are having a good day.
If I missed anyone....good thoughts being sent everyone's way. Pic to follow of my ride home yesterday
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Because I have to use humor to get me thru this. And because I'm a dork. My ride home yesterday....my sister calls this my plunger look. Hope I could bring a smile to a face or two
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Wow! I didn't take tha antiviral medication this morning and I feel almost back to normal already! Thank goodness the heart palpitations stopped almost immediately! Those were the worst! I've just decided that if the meds they give me to fight the SEs of chemo are actually worse than the chemo itself? I'm not taking it!
I'm hoping I'll be able to go back through a few pages and catch up with everyone this weekend. I'm so far behind I can see my own butt!
Until next time!
Lori
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Okay...I'm like 50 billion posts behind. Going to put my nose to the grindstone and catch up. Hoping you are all doing well!
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Boo. Labs today and neulasta has not kicked in yet (how could it not w all the pain?) Wbc was very low, so 1 week of precautionary antibiotics.
I have struggled w some major digestive issues in the past brought on by bacterial imbalance. Popping probiotics and stocking up on yogurt... 0 -
Caught up. You're all going to regret it. Feeling compelled to respond to many posts. Here's my novella. Maybe those of you experiencing insomnia as a SE will find this puts you to sleep.
Welcome arlenew & ingridSA.
Good to hear from you again, scarysadday. I hope your cold goes away. It's hard to kick one as it is, let alone with our weakened immune systems.
Had the TV on yesterday. It was commercial time, so I went to fill up my water. Heard the word chemo so returned to the TV and here it was a commercial for the Neulasta pod. Made me think of so many of you are using that.
Dara - You always make me laugh out loud. Now I am going to be looking for patterns in my peach fuzz. I like to think like you that some day I will get to meet at least a few of the wonderful ladies on here.
seq24 - Wishing you well as you start your infusions. It may be hard. It is certainly NOT something you want. But you will find the strength. And we are here for you. Like you, I work with kids and was concerned to keep things "the same" and "normal" for them. My original plan was to start wearing my hats & scarves from day 1 of school so the elementary students would know me as the lady with the hats. Well, I was having fun with my mohawk, so I changed my mind. I figure I'll just go with the flow. Well, yesterday there was lots of coughing and sneezing. Since I had to be in a kindergarten classroom today, I decided I couldn't risk it and had to wear a mask. I expected the little ones to ask about it. We got started and no comments. A bit later I was helping a few little girls at one of the tables. One of them looks up at me. I'm waiting for it… What does she say? "I really like your earrings." Here I was all worried about them and nervous about making them uncomfortable and they don't even care. They just tell me they like my hair and my earrings. Kids are way more resilient than we think. And they don't judge. That little girl today made my day! I can't believe that comment someone made to you about knowing you'll live 20 more weeks!!! Seriously? It would have take everything in me not to say, "I hope you can run because if not you're going to be lucky to live 20 more seconds."
Tishabe - Your daughter may be feeling more homesick than usual because she's concerned about you. I think it's okay for you to be honest with her that you need her to not add stress to you at this time. While it's your child and you want to be there to support her, she also needs to recognize that 10 calls a day might be overdoing it.
Sensitivehrt- Hooray on the good lab results. Love your "chemo face". Pretty much expresses how we all feel about this. 3 pokes to find a vein? I'd be making a much more agitated face. Ugh! Have to say your plunger look is even better. Love it! I'd rock that look if I wasn't worried it'd mess up my mohawl.
AnnieTater! So good to see you again. Sorry you felt sick and have been busy. It would be nice to just rest and take care of yourself, but we women don't get too many chances to just focus on us. Excited to hear that baby girl is kicking away. She can help you kick cancer to the curb.
LisbethS - I have labs an hour before each infusion. I've been told I could do them late the day before if I need to shorten the time I'm there on my infusion day. But the thought of driving there 2 days in a row (it's not far, just requires dealing with lots of traffic) is not on my list of things to do. I'd rather just jam it all in one trip, even if it means waiting that hour between the blood draw and the infusion. Oh, and feel free to rant here or anywhere. We get it. If you want to keep peace in the family but think your sister needs to be put in her place, I think most of us here would be happy to do it.
ajbclan - I'm with you on hating being treated like "you poor thing." Just treat me normally or leave me the heck alone.
Lori - So good to see you back. We have missed you. I get my steroids at the start of my infusion as well. That sucks that your MO switched up your appointments for the long weekend. I guess BC takes a holiday when we do. Yeah, right. I second sensitive's recommendation of the L-Lysine. Have used it for years. It's a natural anti-viral.
Caligirl - Sorry you've had a week of insensitive remarks made to you. Yes, most of those people were probably just trying to be supportive but just have no idea how. Even when I know that, I still get irked too. I must say, though, that friend who emailed you that article…that person was totally clueless. Not sure how I'd handle that one. When those kinds of things have happened to me there's a part of me that wants to correct the person so they don't do it to someone else. Then another part of me thinks I'd be wasting my breath. If you haven't been in our shoes, I don't think you can really get it.
djm71 - Chemo definitely is a tough road. Forget the SEs…just navigating all the appointments and having BC really rule my calendar has been hard. I can relate to that emotion of feeling like this is something you can't put behind you. It is totally normal to feel that way. For me, I pray that I can find the balance of realizing the seriousness of my diagnosis so that I am proactive about my health and not letting myself live in either perpetual fear or oblivion. It is not easy. Some days are harder than others. Just another reason I'm so glad we have one another. The ladies here can appreciate the swinging pendulum of emotions we all endure. BTW, your sister sounds like a gem.
Sattipearl - Glad to hear from you again. Equally glad you have an amazing BFF who is with you through your treatments and a CEO that knows how to be a blessing. I wish with all my might that I could change your diagnosis…or that I had the right words. All I can tell you is that you are in my prayers and I am holding you close in my heart. Wishing you the most wonderful 10 days of feeling awesome. Looking forward to hearing about that amazing beach trip. We all need to remind each other to savor every moment. Life can be hard, but it can also be outrageously good . Sending love your way!Taxol/Herceptin #4 for me tomorrow. That means I'm 1/3 of the way through that protocol.
Grateful for each and every one of you. You are amazing women, and I feel blessed to know you. Hugs!
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hi all,
Am better today, and that's after 2 separate doses of 8mg zofran. Otherwise, the usual fatigue.
Djm71, the reason you are not bothered by us the way you are bothered at the clinics is you are known here and you know it. Those random remarks by strangers can be jarring. I had an unknown older (70s) woman slap me on the back several times as she regaled about the buffet we were staying in front of at a grocery store. I turned and said to her, "did you know I have cancer in my bones? It's in my back, right where you're slapping me." She removed her hand like it was on a hot stove and said, "I didn't know." I said, "exactly. Please remember that", and turned and walked away. Sometimes ya gotta be an educator. She'll get over her burn....
Regarding SEs. No one knows. We're all different and we have different reactions to the same thing, as has been said. I've had the Gemzar Carbo cocktail 4 times, 2 no infusion pain and intense SEs, 2 with infusion pain, one with NO SEs during or after, and the other was yesterday. I was kinda hoping that the infusion pain equaled no SEs but.....not true.
This weekend one of my dear friends who is a little coo coo is flying in for 2 days to be with me. I am looking forward to being with her, and she is someone I told she couldn't call after 2 months of her unhinged-ness at my diagnosis and calling every day with the next thing I should do about the cancer. I don't know about you but I had a hard enough time dealing with my own reaction when early diagnosed, and with no energy for others' craziness that I might normally disregard. At 18 months in we started talking again and she apologized. Her MIL was diagnosed during that time we weren't talking and my friend tried the same behavior with her and she put a stop to it immediately. My friend 'got it' that what she was doing was completely unworkable. If she gets coo coo, I'll just go take a nap.
A good friend told me early on: there is an 'I' in illness, an a 'we' in wellness. I love how your families talk about how 'we' are doing while talking to others who check in.
This is it for me now.
Have a great weekend,and much love to you no matter what is going on.
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Hope you all have a restful night. I am starting to feel very tired so think I'll go to bed and let me tell you this is early for me... My chest area is not knowing if it has indigestion or heart pain ... I'll go for indigestion.
dmj71 ... rant on sister that is what we are here for. We all understand what we are going through and try to encourage each other ... I don't want a some stranger person to tell me how their aunt lily died of breast cancer ....I'm thinking bitch slap but I'm too much of a lady .... But I do want to hear how one of you might of lost someone close to you and you scared now .... We are in this together.
Sattipearl ...hope you have a good weekend with your friend and she behaves herself. Stay strong.
Love & hugs
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Thanks for all your support in dealing with my sister's comments, I can't even express how much it helps me get through this. Below I linked a great article that is very relevant to what we are all talking about and experiencing. Did I get this from you seq24 or maybe out on the posts on the rant page, argh can't remember. It helped me to understand why the "just be positive comments" get under my skin so much.
Hopefloats,Thanks for the words of support, wish I had said STHU!
Annie, Yay yay yay, so glad you checked in. And your baby girl, oh my gosh. The feeling of carrying my babies around in my tummy and feeling them kick, was so amazing.
Ajbclan, Oh no, your poor daughter (and you). Guillane Barr is so scary, I only know about it because they briefly thought i had it but it was just neuropathy. I can't imagine seeing your daughter go through that.
Lori, Yay your back. I get my steroid in pill form day before and day after chemo. On chemo day I get it in the IV only--no pills. I know what you mean about some drugs having worse SEs than the actual problem their supposed to be fixing. I'm so sick of drugs.
Caligirl55, you crack me up. I like the your mom's comment, I got that in my knee once, it goes away. WTH? That's classic.
djm71, oh my gosh, your sister is a doll, wanna trade? Sorry you are having such an awful and rough road. It just really sucks. And I know what you mean about how out on this forum nothing anyone says, ever gets on my nerves, its weird but cool.
Sensitive, Awesome picture! I laughed so hard but my husband was sleeping next to me, so I tried to laugh quietly, but the harder I tried, the louder I got. The look on your face getting your infusion captures it all in one picture!
seq24, I'm about your age, 51, and thats one of the only good things about cancer for me, when I was having my babies 10 and 13 years ago at the age of 39 and 41, I was constantly referred to as "our older patient…", "our senior pregnant ladies have more…" I'm always the oldest mom at the PTA. And I married a younger man. So every time my BS and MO refer to me as a young BC patient, I'm always wondering "who the heck are they talking about?" Not exactly the circumstances under which I wanted to be called young again, but I'll take it.
Kz1966, good to know about the port not hurting without Emla cream, my original (mean) PA gave me an RX for EMLA cream that was so small that it was only good for one use. Was trying to decide if I should go through the bother of getting it again. the nurse today wiped off the cream and sprayed it with cold spray and I didn't feel a thing. I think I won't bother with another prescription and just go with the cold spray.
djm71, oh my gosh, your sister is a doll, wanna trade? Sorry you are having such an awful and rough road. It just really sucks.
Kechla, I'm so sorry about your labs being off. I need to get back on my pro-biotics. I feel like I'm letting all my healthy things I was starting to do after my BC DX slip because chemo has taken it all over and now I am just in survive chemo mode. I need to get some balance. Hope your WBC comes back up soon. Bummer to have all that pain and still low WBC.
Fireheart, Congrats on being 1/3 of the way through! I sat next to a man who was getting his final infusion today, and he never stopped grinning from ear to ear for three hours. He was one happy cancer survivor! Fun to sit by.
I finally got my first infusion today, actually yesterday 9/1. Thanks for not kicking me off this group even though I am officially a September girl. I'll post how it went tomorrow, I think I might actually be able to sleep now. 6:00 am - I hate you Mr. Dexamethasone! Argh, no sleep so sorry if nothing I wrote makes sense.
And remember ladies, "Think positive, chemo is what you make of it" Unicorns and glitter! STHU!
xoxoxo,
Lisbeth
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Well, damn. Bone pain set in yesterday, late morning, and woke up to mouth issues again this morning, after rinsing mouth every 30 min. yesterday with baking soda and biotin. I'm thinking maybe my bones are reacting more to the neulasta since I have already had several joint replacements due to psoriatic arthritis. Even during the night, I just had such deep aches in my butt, I had to get up and lay on a heated "bio-mat" my BIL gave me. MO gave me norco for the bone pain and I did finally took one last night. Very light-headed also this time, which I didn't get last time. Every time I'd stand up I got dizzy. I'm not sleeping during the day, but frequent;y feel like my eyelids are just too heavy and must keep them closed.
So can I rant about something non-bc related? I'm not sure if I've posted that I have 5 incredible grandchildren. One is a love of my life whom my daughter adopted from Ethiopia at age 1. This little guy was lucky to have survived his first year, was malnourished, ill, had ruptured eardrums causing partial deafness, sensory deprivation, and has ultimately been diagnosed with many disabilities all related to the first year of life. He's loving, smart, but quite a challenge. He is now 5 and just started a special day class kindergarten in a signing school to which he is bussed 40 minutes each way. He has so much potential, and he and I have a very special relationship. He'd come and live with me if it was possible. Well, the new teacher, who is supposedly a trained SpecEd professional, hates our little guy. Not exaggerating, the teacher keeps calling saying what problems she has every day, and what possible goals could my daughter have for him? My daughter (also a teacher at high school) asked her if she could identify one positive thing she'd learned about my grandson since the start of the school year. It was dead silence and the teacher finally said she'd need more time. My daughter said fine, and kept her on the spot. The teacher finally said, "Oh I know, he gets on the bus nicely to go home." He's been sad at home, and signing he wants to go to another school because his teacher is not happy with him. After 25 years in education, I just want to go flatten the teacher. This little guy has overcome so much and my DD is 100% his advocate, but shouldn't have to deal with with this, plus worry about me. OK, sorry about the rant.... Just amazes me how insensitive people can be, whether it's with us or with children/people who are different. sigh....
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lisbeth-I had to smile at your post. You sound just like me. I had my first child in my 20's the second not till 9 years later. I was always the old mom at school too. The first time I heard that I was a young cancer patient I had the same reaction as you. Kind of like "who, me????" I was talking to someone on the phone yesterday who went through this in her late 40's, the same exact chemo as me. I was really questioning her about her side effects, etc. She said the worst she had was there was one day she didn't "look good". Hopefully that good result came from being part of the younger crowd. If I could only be so lucky. I am fearing the worst.
Thanks for the smile this morning!
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Dara, sorry about your pain. I have so much too and the MO said the neulasta goes right to your bone marrow and will always settle in your weakest spots. I have a cervical fusion and bursitis in my hips and that's what kills me. Glad she gave you something for it. Love the bio-mat, my chiro uses it when doing acupuncture. Have you tried that?
Also, sorry about your grandson. I have 5 grandchildren, too, and it breaks your heart to think anyone would not be caring and empowering, especially with a special needs child. Breaks my heart to hear this
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Lisbeth - Your last line made me LOL! I think I'm going to develop a STHU glare I can just inflict on idiots of all types. When I worked in the class room more, my middle school students used to tell me I had a way of giving them an "I'm gonna kill you if you do that again" look that made them stop in their tracks. Just have to tweak it to use on adults.
This past week, while making excuses for not being able to use the technology in his classroom (that he's had training on and access to for 3 years), a teacher boo-hooed about how tough it is, chuckled at me and said with a sigh, "You don't know." I cocked my head, made direct eye contact and said, "No. YOU don't know," then walked away. What I wanted to say was "Hmm...let's see. Diagnosed with a brain tumor last spring. Summer of deciding what to do. Meanwhile, problems found on a mammo and needle local bx, then a craniotomy (which could have resulted in a trach and/or feeding tube) and 7 weeks out of work, meeting with breast surgeon the day I go back to work to hear I need a lumpectomy. 2 lumpectomies, a BMX with TEs, invasive BC dx, and 3 of 12+ chemo treatments later...I THINK I KNOW!!!" Okay, all, thanks for letting me rant.
Dara - Ugh to your bone pain! I know my ughing doesn't resolve it, but hope you know that I (all of us) hate that you're going through it. Your DH had that creative idea to hot glue your hair back on...what does he suggest for the bone pain? Has he got a drill?
Sorry that your grandson isn't getting the support he deserves. I know that educators are human, but it's that teacher's JOB to find the good in the little guy. Your DD is doing a commendable job of making sure he gets what he needs.I spoke too soon about being 1/3 of the way through the Taxol. Felt really tired after work yesterday and took my now ritualistic nap. Had a headache too, so went to bed taking an ES Tylenol. Woke feeling just not right. Still had the headache and that sensation I get when my body is trying to fight something off. The entire drive to the center I was feeling light headed and generally icky (great vocab word for someone 20+ years in education). Went for my blood draw and then had an appointment with the PA. My BP was high for me and I told her how I felt. We decided it was best to hold off on infusion for this week so that my body could work on dealing with whatever this is. Picked up a Z-Pack on the way home (told to start it if I feel worse this weekend). Took a Tylenol and Claritin and zonked out in bed for a 2 hour nap. I'm hydrating like it's my job. I want to go to a college football game tonight. Have my mask and other protective gear and meds packed. Feeling better but undecided. Before BC I'd have toughed it out. This darn disease. Grrrr!!!
Off for some more rest before I have to make up my mind.
Love to all!
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Happy Friday!
Wednesday was a rough day for me. My hair was beyond ready to go and I had a serious case of the runs (day 7, I guess!). I felt weak and scared and overwhelmed. While I was staring at the ceiling at 3am Thursday morning I decided that I wasn't handling cancer the way I wanted. The next morning I cut off the giant dreadlock that had become my hair and I felt better. More in control. I shaved it all off last night. I had mus husband do it and I am glad he did. He didn't have to see it for the first time, instead he was in control of it happening. I wish I had gotten a cute cut after I was diagnosed. All of my plans have been about "hiding" it from people. A short cut would draw attention to a longer wig. The truth is that I can't hide it, that I have to keep telling people over and over. And that I really need to accept that this is who I am. Wigs are obvious, bald heads are even more obvious. The world is going to know - so how do I want to handle that? How do I want to represent myself ? The problem is that I don't feel strong or empowered (which is the image I would prefer to express). I feel scared and weak. How do you change that? Sorry all. Bit of identity crisis over here!
But the real news here is that I am feeling better, stronger, more in control. I really believe that, for the most part, life is what you create. Obviously I am not responsible for getting cancer (at least that is what I keep telling myself). Lots of things happen in life that are beyond my control. But there are parts of my life that I can control. I would like to control my response to having cancer with more grace. So I am working on that. And feeling like I have some sort of control here is helping.
Sattiepearl - I hope your friend's visit is fun and she more more cuckoo than crazy!
Hi Lori - so glad you are feeling better
djm - I so feel you on the intense emotions. This is really an intense experience with intense long-term implications. I am glad you talked about it here because I feel exactly the same way that you do. It is great to hear some of the dark feelings that I have but rarely express articulated.
sensitive - It sounds like we are having some similar "typing." My oncologist doesn't think tamoxifen will do my much good at this point. So we, go on... At least we get through this part.
seq24 - I was a wreck before my first AC. Way worse than surgery or anything. It was like falling off of a cliff for me. I felt so much better after it was over. That night I just felt like a weight was off of me - I guess the weight of the unknown. I am one of the lucky ones with pretty mild SE's, and I am not going to tell you that you will be fine - but I hope you do feel better when the first one is over - like I did.
Dara - So sorry about the bone pain! That stinks
And that teacher needs a life check. It infuriates me that she would be so callous to a FIVE YEAR OLD! He deserves better. Are there any other options for your daughter?Much love to all! I hope you guys enjoy the long weekend
Annie
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