Sept 2012 chemo
Comments
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Hello my sisters i hope everyone is doing great!!! i just wanna let you guys know that i found a great site for medical ID bracelet...you can create your own
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I've been home for a couple of hours - went to PS today for a fill. The valium is making me very sleepy. I told him the top of my foobie area hurts. He explained that the cut nerve endings are sending out SOS signals to the nerve endings that aren't cut - trying to reconnect. They are sending signals to my brain & my brain is trying to figure out what is going on. He said that was good; I was getting feeling/sensation back. He said eventually the nerve endings will stop sending out those SOS signals and eventually connect or die. It is a process that may take up to 18 months. He said whatever feeling I have at that time will be what I will have going forward. He said it is a facinating process and that nerve endings can regenerate themselves. He also said I should start to feel cold and heat sensations too, as well as itching. Sometimes those sensations are read wrong and the brain will allow me to feel them as pain. He said most times the BS will tell patients that all feeling/sensation will go away. He said that it is not necessarily true. He was pleased to know that I was experiencing this.
For those that will be going through this process, ask your PS about this. I am curious as to what they tell you.
I'm scheduled to return for my last fill on Tuesday. We have tentatively scheduled the replacement surgery for April 4th.
Hope - That is a great analogy! Now that I've had more fills, they are 'rounding out' a bit more.
Mariposa - If valium doesn't work well for you, ask about vicodin. Tylenol was not enough for me. Yes, it would be a good idea to get the fridge fixed! LOL! Something that we did that was real helpful to me ... I was not able to lift a gallon of milk or iced tea pitcher. DH filled smaller containers for me so it was easier. Also, before surgery I rearranged the items in the fridge. I moved the commonly used items to the middle shelves so I did not have to reach for them.
I am interested in how your MRI & ultrasound turn out. I am having such difficulty with the most simple tasks. I am sure it is related to chemo. I would most definitely fail!
I loved the Medusa story card. It does seem so appropriate. You continue to inspire and amaze me.
Jojo - 'One day at a time is right!' We are here for you! Thank you for your participation in the research project. It is just so wonderful that you and others are giving back and helping women that may face this in their future.
I am so glad to have found all of you. Thank you for sharing - for being honest - for being each other's champions.
Hugs
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PatinMN & Faith: Thanks so much for the kind words about my blog. It has been such a healing process for me to get things out - and it forces me to do art! Which for me, has always been an important part of my healing process.
Faith: That sounds like great news around the possibility of increased sensation (not the pain part though). Hopefully your nerves will continue to regenerate and reconnect:-) Thanks for telling us about it so we can know what to look for and ask about.
Patricia: Thanks for the link to the bracelet site! I need to get mine this week.
Jojo: The research project sounds really interesting and so important. I have felt all along that since this crazy thing has happened to me, I might as well do what I can to make it useful to someone else. Who knows- maybe your information will be the key!
As for me, I am pretty down. I was so hoping that they would do the mammogram and ultrasound and say, "Where did it go??? - We can't find anything at all." I kept visualizing it in my head - over and over again... "It looks like you have had a pathological complete response." Well... that didn't happen. Although the tumor has shrunk by amazing amounts, it is still there. I could see it on the screen and I started crying. I cried in the dressing room. I cried on the drive home. I am crying as I write this. I just wanted my prognosis to be excellent... I guess it still could be. I am just disappointed. I asked about whether it could just be scar tissue. The radiologist smiled politely, but said that it looked more like abnormal cells. (darn) I need to focus on the fact that I am lucky there was such a good response - and that I still can have an excellent prognosis. Oh well. I also decided when my breast was being squeezed to all hell that I don't want any more mammograms... so I am doing the bmx for sure.
As for my brain MRI - they didn't really give me any information as of yet. I do think I actually did better on most of the cognitive tests (Memory and one that I am not sure what it was measuring) but I did much much worse on the reaction time test.
Okay... I need a kleenex.
Thanks for listening to me wallow in sadness for a bit. I will be fine... just disappointed, but I know that I am still blessed. It will be okay.
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Mariposa- I am so sorry you are so sad, but listen it's going to be ok, more than ok.. you did chemo and whooped your cancer's ass and now you are just going in for the final KNOCK OUT with your surgery. Sending you lots of strength and hugs.
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Patricia - Great link for the bracelets! Lots of variety to choose from.
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Hope - Good luck with your first fill tomorrow. You'll do just fine! : )))
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Mariposa- I am sorry you are so sad and disappointed. You said the tumor shrunk by amazing amounts. That is great news! You're going to be okay. You are doing everything you can do. I am glad you made the decision about the surgery. You're going to be okay. Believe that you will be. Have faith. I'm sending you lots of hugs ...
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Mariposa , you are going to be fine. We are all hear for you . God has a plan for your life and you are being healed from cancer.
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Jojo god love ya. I could not handle working right now going through rads. You are strong . I am so glad we get the weekend off. My foob needs to rest . Just think we have completed one week tomorrow.
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What a day! Took my son to the doc he has been coughing so bad to the point of puking...poor lil man.. With my surgey only days away I was freaken out thinking I'm gonna get sick too! Turns out my boy has the common cold... I was thinking bronchitis or whooping cough. Thought I was in the clear but nope I now have a sore throat... Wth and my daughter has spiked a temp!
All this sickness is freaken me out!
I also had surgery rehearsal which was basically a run thru of the drains, the rooms you stay in ect.... Was nice though and made me feel like I was an actual person to my doc and not just a lick n stick! But also solidified that its fast approaching...
Took us forever to get home we got 10 inches of snow today from 1 to 9 and its still.falling! School already closed for tomorrow... We drove 35 mph the whole 45 miles home...thanking god that is over and we made it home without ending up in the ditch!
After being home for a bit.... A knock on the door! Hmmm who could it be???? It turns out to be a pastor from a local church he says they have been praying for me for the past few months and he had been trying to locate me so he could come over and say a prayer with me! This man took it upon himself to go door to door tonight in a blizzard to find me and pray.for me! I was beside myself! I was at a lose for words.... It felt fantastic to say that prayer! This def lifted my spirits...
Mariposa....so sorry u are sad! We got this... And you are strong. Cancer may be showing its ugly face today but with your upcoming surgery it doesnt stand a chance...
Hopex....good luck tomorrow! Hoping for an easy fill that gives you volume not valum! -
Hi All,
For all those having upcoming surgeries, I HIGHLY recommend getting bestform model 5006014 cotton sports bras. Get them in a much larger size than you usually wear--they shrink, and you will be swollen. They are super soft, open in the front and best of all, cost $7.99 at Kmart. If you google it, you can see a pic. They have saved me, at first right after my bmx and reconstruction last summer, and now having just undergone, what my PS is calling a "salvage operation", but what I am calling my exchange surgery.
I had the exchange surgery on Monday and the recovery wasn't bad at all (except for my allergic reaction.) I was driving two days afterwards and today, 3 days out, I was pretty much doing my regular routine. I saw the PS today, who still says there is a significant chance the implants will have to come out, because my breasts are still red, and he thinks the area might still harbor some infection. The critical time will be about a month from now, when I go off the antibiotics. If they have to come out, I am taking a sharpie and writing in huge letters all over my chest---Paper tape only!!! Apparently, telling the anestesiologist that I'm allergic to the tape isn't enough. Besides being beyond itchy, I actually got blisters from the tape. I had a herceptin infusion yesterday, and the nurses were all coming over because they couldn't believe the reaction I had.
My PS prescribed valium for after the BMX/reconstruction as a muscle relaxer. He explained that during the reconstruction, he had rearranged muscles, he didn't want them to spasm. He actually said that some patients thought he was prescribing it as an anti-anxiety med, and didn't take it because they felt they didn't need it. Anyway, if your dr. prescribes valium, take it!! As an added benefit, it helped me sleep those first few nights.
I also recommend taking xanax the day of the surgery. (My drs had no issue with it.) It is obviously a stressful situation, and taking xanax can really take the edge off.
Good luck to all.
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Mariposa...I'm so sad that you are sad! I know we all want perfect results but you will be there after surgery. Your tumor has shrunk meaning the chemo did work also meaning it killed the little floating bastards, if any, too. You will feel so much better after surgery knowing its completely gone from your body. Just hang in there. That day is coming fast!
Hugs to you!
Amy...I got goose bumbs from your story about the pastor coming to your house. He was an Angel sent to you telling you everything is going to be ok! Hope your little guy is feeling better. -
Amy that is awesome that pastor came by and payed for you. God is good
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Amy: What an amazing story about the pastor! That must have felt like such a good prayer session - especially before your surgery. Your community has really reached out in such beautiful ways to you... which as I said before, must speak to the kind of person you are. I appreciate your positive attitude and encouragement. It means a lot to me... especially on those days when I am struggling. Be careful driving in that weather! Maybe because I am here in California, but that sounds scary! Hope your daughter and your son are feeling better soon. Start taking lots of Emergen-C.
cgesq: Glad you are recovering so quickly! Sucks about the tape though. I hope that the implants don't have to come out and you are just on your way to complete recovery!
Thanks everyone for all of the encouragement. I am trying to shift from being sad about what didn't happen- and being happy about what did happen. It is hard, but I am trying. And who knows, my surgery isn't for a week and a half... maybe after surgery it will look even better. (I did just get another Herceptin infusion after all). Okay. Thinking positive. Chemo was just the first round. I still have surgery, radiation, the rest of my year of herceptin, and ten years of tamoxifen. I am going to live to be well over a hundred. (My new mantra starting now)
Last night I couldn't get to sleep until way past 4am. The stupid neuropathy in my feet was burning like crazy. Hoping tonight will be better.
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Mariposa, it will look better once the surgery is done; one more thing off the list. I think getting chemo over with is one of the biggest things even though we are still suffering the residuals of it, especially your neuropathy. My insomnia is probably my biggest annoyance and here we are up at ridiculous hours on the west coast! I did fall asleep but after waking with a terrible dream I finally got up~~cold and dark out but good to share with all of you regardless the hour.
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Amy: sore throat?? That sounds like the cold me and two of my boys are recovering from. I got turned away from chemo Monday but I'll be able to do it this coming Monday. I had a fever, sore muscles and super sore throat.
Thanks for the comments on the photo! I took three photos of me in the exact same place wearing my blonde wig, my brunette wig and then just me bald but I couldn't figure out how to stitch them together. I need an art workshop with Mariposa!!
Mariposa: like you said, looking at what did happen versus what didn't, I see that the chemo did the job it could do and now surgery will do its job and take care of the rest. Your new mantra is great!!
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Amy: I think we're getting the tail end of your snowstorm up here. Snowing now and supposed to snow all day!
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Mariposa and others, here is the info on the research test I will have. It maybe something those of you with BRCA negative results and high family cancer histories may want to explore as well:
www.ambrygen.com/tests/ovanext
Mariposa - you will survive and thrive! My tumor was still there (amazingly smaller) and I still had micro amounts in one node. My MO said ER+ gals almost never have a complete response (AMY did it though!!). You did great and will do great.
Amy - it was a sign you are being watched over. Hugs!
Cherioo - I am working from home today. I just couldn't drag myself in!
Cge - I recommend xanax for any stressful time. I wish I had taken before my first rad treatment.
Stay safe all in the Northeast! We are just missing it.
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Maripisa..... Yes that's the spirit..., we still have so much fighting to do surgery.......radiation ...... Hercepton.....and taxomine...,, so that's a lot ... And that how I feel too...... We got each other .....
Amy I'm glad that your pastor prayed with you everything is going to be alright ......
Sending love to everyone and speedy recovery..,.
10/12 taxol today ..... I can smell ....feel....... Touch..... .........the victory!!!!!!!!!!!!!!!
Have a great weekend!!!!! -
Hopex.... I didn't get chills till I read your post! I am gonna write the church a huge thank you... He was def an angle and god is good!
Patricia.... Keep moving forward! You are so close...
So the sickness gets worse... Last night my baby.girl woke up puking I was up most of the night with her and this morning I can tell I am def sick! Waiting to be plowed out cause we are snowed in! Then the DH will be getting me zicam.. What will they do if Im still sick postpone my surgery? -
Amy so sorry about your daughter. I pray for quick healing. Be sure to take care if yourself.
Hope. Love it! So touching.
Patricia. You are amazing. The light is near. U can do it.
I have not felt great this week and its got me down. Nothing major. Just no energy. Achy. Headaches. Neuropathy. Grrrrrrr. Praying it all away!! We just want to be well!
Wanted to say that a devotional book I have really found encouraging in the midst of this madness is Jesus Calling. It has a short excerpt for every day of the year. Each one that I read is perfect for that day! It's like God speaking directly to me saying. Yeah. This stinks. But I've got your back!!!! I encourage everyone to check it out. May your day be blessed. -
How's everyone doing with weight loss? I have lost 1 of the 14 I need to and with the fatigue of rads I feel like I may explode after 6 weeks. BLAH
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Jojo.... Me so not good! I was walking on the treadmil and eating right..nothing! I keep wondering if it has to do with my hormones being all out of wack... So frustrating...
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jojo - I've lost a whopping 2 pounds since starting rads. They weigh me each Monday. On my home scale I bounce up and down depending on...who knows what? But I've probably come down about 5 pounds since finishing chemo. This week I've been very bad when it comes to exercising - haven't been to the gym since Sunday. So I'm guessing I won't want to look at my weight next Monday. Actually, Tuesday - the rad center is closed on Monday for training on new software, so I get a 3 day weekend. Yippee! My toasty boob gets a rest, just in the nick of time. I hope the session on Tuesday isn't all messed up because of their new software.
Edited to add - I needed to lose a lot of weight before this schmoo got started, so the extra 12-14 pounds really sucks.
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I swear, in my past if I had a week of eating right, I would lose five pounds no problem. Now- I eat right and gain a pound. I need to exercise more, but I think Amy you are right. It is our hormones. And I heard chemotherapy tends to lower your metabolism. Not sure how long it takes for it to get back to normal. It would be a lot easier to rock my cool buzzed hairdo if I didn't feel so pudgy. Oh well. I have to lose about 12 pounds at this point to be where I was before chemo. It will happen.
I have also heard people say that you gain weight on tamoxifen. Have you all heard that? I hope not. Thanks Jojo for the info about er+ cancers being less likely to have complete response. Does make me feel better. I feel like I am in school and I got a B+ when I studied really hard and expected an A. Heavy sigh. It will be okay.
Amy: Hope you and your famly are feeling better!!!
Patricia: I just love your energy and spirit. Thanks for the encouragement.
Foreverchanged: I think your picture is beautiful:-) If you want to send me some pictures, I could maybe stitch them together for you on one of my nights up at 4 am with nothing to do! I would love to try just for fun. I have so much fun playing with photographs- but it would be great to have a different subject other than just me. I am getting a little bored of myself. And thank you for the encouragment too:-)
I am feeling exhausted today. I just got a notice for jury duty. I am going to try to get out of it.... I think I have a valid excuse.
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Hope--how did your first fill go?
Amy--prayers for you to stay healthy. That was such a wonderful story of the pastor coming to visit you during the snowstorm and praying for you and your family!
Mariposa--you are going to get through ALL of this and come out an even stronger and more beautiful person in the end. It's good news that the tumor has gotten smaller.
I had my ultrasound with the radiologist yesterday and my main tumor is now 0.7cm from the original 2.1cm after 6 rounds of chemo. The tumor "friends" are now a few mm large. I asked if it was tumor or scar tissue and she said that because if its lumpy shape, it is still tumor. But they don't know for sure until the get pathology on it during surgery. Then a few hours later I had an appointment with the PS. He said that when the BS removes the tumors, I will have a big divot because I will have a portion of the pectoral muscle removed. My tumors are just below my left collar bone and are not together. And since they have to get clear margins, I will have a big hole. I can't fill it with fat (I offered my thighs, buttocks, belly), but that will not work. They can use my lattisimus, but I don't want to end up with back pains because if the muscle loss. I don't think I'll be losing that much range in motion of the left arm. I may never get to do a proper push -up ever, but that's fine with me. Since I will have radiation afterwards, they can't do any implants in there.
I know I'm so shallow to think that I won't look "normal" anymore, but I can't help but grieve that I won't be able to wear a strapless sundress or spaghetti straps anymore without a hug hole on my chest. Aaargh, I hope that the BS will have something to say or better news when I see her sometime in the next 2 weeks.
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Had my first fill today! Took a pain pill before. It didn't hurt at all. And I can't even see the difference. My PS can sometimes be an arrogant A Hole. ,I asked him if I could wear some sort of a bra thinking it might help me feel put together...and he just asks me, Why? Well, because you little shit, I want too. Of course, I didn't say that to him. My DH thinks he likes to give me a bad time. I'm going to buy one anyways...I'm thinking it might help for sleeping. The TE's feel like they move as I flip flop in bed.
Amy....I'm sending you healing vibes....can you feel it?....
Florbo...I bet your BS will have some good advice for you and you won't have as big of a hole as you think. Your not being shallow at all. We all just want our old lives back but this cancer takes things away from us, emotionally and physically. It sucks! -
Even though this whole weight issue completely sucks, I am relieved to hear it's not just me. I agree I feel like if I was eating this way and working out this much in my "before cancer life" I'd be dropping some lbs....but not now, wtf! I starting tracking my food and I've going to the gym pretty regularly and the scale won't budge. I try to focus on the fact that I am getting stronger, feeling better, being healthy, but dammit if i have to barely have any hair, can't I at least look decent in a pair of jeans...not that i feel like I have worn anything but sweatpants for the last 5 months. Ok, rant over...bigger and better things to think about
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Hey guys, I lost weight while doing chemo but man once I stopped I want to et all the time. My DH says I have a tape worm . Once I have more energy to work out after rads I will really try . Right now I can't
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Im also wondering why eating healthy and working out isn't having any effect. So frustrating! I've been really good and last time I went for a Dr appointment and they weighed me I was like, check me out! But no. I had GAINED 2 lb! Wtf? Guess its hormones (or lack thereof) and chemo pause.
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