Starting chemo August 2014
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Someone at work got this for me. Think I will wear it for Halloween!!
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CJT, I hope you can say adios to the decadron! I really hate the steroids.
Justamy, I'm so glad you're getting some help and relief, even if it's going very slowly. Hang in there...
Hope, that is very cute and spunky. Love it.
Thanks, all, for letting me vent yesterday. I needed to get it out of my head a little bit. I'm feeling somewhat better today.
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I went and got tattooed and set up for radiation today. I begin the daily 7 week journey next Tuesday. At some point I will begin tamoxifen or one of those drugs. Not looking forward to that and those potential SE's. Anyone else on here have to take that sorta pill for 5 years or more? My MO said we would discuss that at my next appt.
Everyday is better. Hang in there everyone. Remember you are not alone. So many caring people here.
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CJT= Super news!!!!
Yeah Just amy
Hope+ Love it!!. Some gave me the F__K Cancer tee shirt which I wear to work on the weekends. HEE HEE Don't tell my boss.
Thanks for all the advise on food. Tried KFC mash potatoes today. Really bad. Then drank a milkshake from a great ice cream place. That was ok at best. Able to get down yet not very good in taste. My boyfriend tells me when I go out which I seldom do now I should order food that is stale or rotten. Ask the kitchen for food from the garbage. He says it would not matter. Everything taste bad. He is right, I could not tell something that taste good from something that is poison. I hope this goes away at some point. I googled it and it said could take 3 to 4 weeks to go away after last chemo.
Hope everyone is doing well and making it to the next destination.
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Oh Amy: you've had a tough haul!!! I know it's tough on the family but you are in the best place possible to take care of YOU!!! I know it's foreign to alot of us but we need to take care of ourselves so we'll be around to take of others for years and years to come. You are in the best place getting the best care possible to get you back on track. Hang in there! You are in my prayers nightly.
CJB:)
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Beatmon, great news on the results of your Muga and CT scans. AWESOME! I am thinking of you as you have your appt with your MO to understand in more details the results and continued improvements.
JustAmy, Oh No! But so happy that you know the culprit and in the hospital to get well and fixed up! Sounds like they are taking good care of you quickly to address the issue. In my prayers for a quick recovery and minimal SEs. Check in and update as you know we will be following your recovery closely.
Eileen, I am with you on the bad taste, not only do I have GI issues but the bad taste is a constant that never goes away -- metallic, cardboard and at times just sour. What I have found is that if I rinse with the magic mouth wash right before eating it helps with making the food palatable enough for me to force myself to eat. The horrible taste is still there but manageable enough for me to force myself to eat. With this said, it doesn't work every time but enough to trick myself :-).
Strong enough, thanks for the update on the radiation and how it is going.
CJ51, Woot Woot on the 2nd Taxol treatment.
I am nervous as I have my first Taxol tomorrow and just taking a deep breath that all goes well and that my body is prepp'd. Blood work looks good to move forward. I am also nervous as the infusion will be via IV and not port. The MO wants to move forward with as many as possible via IV and doesn't want to do another port unless absolutly necessary.
Continually praying for each of you on where you are in your journey. Hugs and thinking about each of you.
Angie
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Amy, I hope they are taking great care of you and that you will be able to go home soon. Hoping and praying you will have easier days ahead. It's about time!
Cassiecat, great story about the great pet bed swap! My cat cracks me up every day.
My blood counts were ok despite the virus I had so chemo was a go today. My 12th and last TH! I will start H only next week and after that it will be every three weeks. November will be busy with echo, bone density, and rads appointments. I'm just so grateful to be through with Taxol portion of the program!
When I got home I got one of the best surprises ever. My daughters put together a video of clips that my family and close friends did. They all told me how much they love me and how proud they are of how I have gotten through chemo with strength, honesty, and humor. Some were serious, some hilarious (my crazy sister!) They knew my center does not have a bell to ring so they all rang different kind of bells to celebrate. They included a door bell, Christmas bells, fancy collectible bells, a cowbell, bells on a cat collar, and more A friend who is moving this week actually fished though packed crates to find a bell to ring for me! And a friend vacationing in Carolina Beach rang a bell (actually a pan lid on a string!) near the ocean. I'm crying again just telling you about it. I am so blessed!
May you all be blessed with easy days and all the love and support you deserve.
Hugs, Sandy
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ladyb, good luck tomorrow! Hope the IV is easy. Drink lots of water!
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Hope50, yep, I will also be on tamoxifen for 5 years. We seem to have the same treatment plan & very similar Dx. I think my MO said that will start after rads, but I do have another follow up with him next week, so I'll check.
LadyB, I had all my chemo IV, no port. They all went fine. Just be sure to eat and hydrate before you go to make the veins easier to find. I always tried to drink extra water the day before and the day of. You will be fine. I was scared of the whole concept of the port, so opted not to get one.
Sandy, that sounds like a wonderful surprise! What an amazing group of friends and family you have!
Amy, glad you are getting better & hope you get to,go home soon! I hated being in the hospital after my 1st round & fought it after that, but there are times when you need to be there. Sounds like they are taking good care of you there.
I'm still very tired and have that annoying tickly cough again this round, and still most things don't taste right. I think it's taking a lot of energy just to go to the clinic every day for rads, so I'm extra worn out. I know, it's only been 2 days, but now I'm dreading a long day tomorrow, with work, rad, and the scout troop Halloween party... Not sure I'm gonna make it. Barely made it through a friend's low key bday dinner out this evening. Sat with my head propped up in my hand most of the time.
NyQuil is on board so I can stop coughing and get to sleep... G'night all.
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Hi Hope, yup, me too with pill for 5 years....not sure which one. I am only very weak ER+, so I will talk to my gyno about ovary removal vs. pill.
Amy, glad it is working at hospital, stay strong ang get home soon!
Ladyb, hope Taxol goes smooth today and no SE!
I made appt for PS consult on Nov. 10, ugh. At least I will have an idea of what we can do. Really wish to avoid TE, but not sure I can. Very down and depressed and anxious today, and feeling guilty about my feelings! I am doing very well, so why can I not focus on that?
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Bippy and all. This cancer treatment is quite a rollercoaster ride, emotionally as well as physically. I think we all have our down days. Please try not to beat yourself up. Chemo is doing a good job of that already. Love, Jean
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Angie, good luck with the Taxol today. I've done all IVs so far too, and I agree that being well-hydrated can really help.
Sandy, that video sounds amazing. What a wonderful gift!!!
I'm another one who will be on tamoxifen for 5+ years when all of this is done. I'm not sure when I start it. I also have to do Herceptin every three weeks for a complete year, so I'll be those infusions through next August.
StrongEnough, I hope the fatigue subsides. Could be some anxiety being released, possibly, over doing a new treatment. In any event, I hope you feel better!
Bippy, I think Jean said it best, so ditto to that! I hope today is a brighter day for you.
Justamy, thinking about you...
Gatomal and NurseShark, thinking about you and your babies...
I go in this morning to have my blood counts checked and meet with my MO. I have some questions for him and also want to see if we are tweaking either my steroids, my anti-emetics or both in an efforts to help with the Saturday/Sunday SEs of migraine and steroid crash. We'll see. I'm afraid of trading in one side effect for another. I also have some questions about things being overlooked. My genetic testing results were in, but they didn't call me. I initiated that. Two weeks ago, they had to do a finger stick and then a blood draw because it wasn't clear to the tech that I needed more than a CBC that day. There have been a few things like that that are starting to get under my skin. I expect better.
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Bippy, I'm sorry you are in the dark place right now. I can relate to the feeling guilty about your feelings! Sometimes you get through the hard physical stuff doing what you gotta do, and then - wham!- the feelings hit you later. I was perfectly confident in my treatment plan until I was doing so well and then the fear and anxiety crept in. It was tough trying to explain it to anyone outside this group. I just kept getting the "stay positive" crapola from friends and family. NO, I can't do that every minute of every day! The mental part of this is tough and I hope you'll keep sharing here. When I shut down, like I am known to do, it just makes everything worse. I'm glad to hear about your adventures as you plan your Etsy store and hope that will bring you joy!
I also look forward to hearing about your decision regarding hormonal treatment. I am only 2% estrogen positive. They have talked about putting me on five years of Aromasin, since I am post menopausal, but I have to have the big talk with my MO about risks/rewards. More decisions, yikes!
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:)Got our official induction day!! November 10 th we start! I will be 36 weeks 4 days then and 3 weeks out from last dose AC.
This is our first . Super nervous for labor: / OB says baby s head is engaged -1 already. Not dilated yet but 50% efaced.. Hopefully induction goes quick but she prepared me for the possibility of drugs not working the first time, sending me home and trying again after 24 h break.
I'm usually super fatigued by this time but I think I'm too excited. Main SE this gosh darn constipation !!!!!! So annoying
Thinking of all of you !!!
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Nurseshark= You have a lot of new aunts rooting for you and loving your new baby. Don't be nervous. As soon as you go into labor all the fear of having the baby goes away. GOOD LUCK!!!
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nurseshark- that's great news. We will all be pulling for you and baby nurseshark! Do you know if you're having a boy or girl? Do you guys have names ready? Sorry if I missed you posting about this.
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NurseShark, that is so great! Less than two weeks to go. I'm so happy for you.
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thank you .it's a boy, Levi Emmanuel
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Nurseshark, I'm so excited for you! Count me in as a member of the aunties club.
. You are going to do great. And, that is a wonderful name for your new baby boy!0 -
Nurseshark, that is the Best. Name. Ever. So exciting!
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Hi Ladies,
Gatamol - I can totally relate with the MIL situation. Even worse one of my SIL and MIL came to visit not too long ago. I ended up waiting on them and feeding them. My SIL didn't even pick up a dish to clear the table. (Entitlement). Actually lifted a spoon up and said it was dirty. I told her to get off her butt and go get another one. I told my DH afterwards no more family visits for a while. It actually set me back that week.
Justamy - wishing you better days soon.
Nurseshark - Congrats! Welcome Levi Emmanuel....
Halloween is my 5th of 6th treatment. Not looking forward to it at all. Got my blood work done today and will start steroids tmrw. My daughter is coming in to be with me. Didn't bounce back quite as quickly this last round. I will say my mouth was better this time since I sucked on ice thru infusion. Thinking of bringing ice pack to put over my eyes too. Not sure it will help, but my eyes run constantly.
Hoping everyone is feeling better each day and we get to the end sooner then later.
Keep on kicking cancers butt, we will do this!
Cathie
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I LOVE LEVI!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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nurseshark- LOVE!!!!!!!!! So exciting.
I am living vicariously through you all because after this I will more than likely not be having another kid.
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Nurseshark, count me in as one of his aunties also! Love his name! You will a do great. So excited for you.
Catie, hope this next round goes much better. Be sure and chew on ice again. Have your eyes been twitching? Mine are like crazy.
Bippy, hoping today is a better day for you.
Strong enough, how you doing with radiation?
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My left eye is twitchy all the time, on the lower lid! Drives me crazy!
I had an interesting meeting with my MO today. He's the only person on my team who has not been personable, encouraging, etc. and makes me feel rushed. Well, not today! I had 8 questions/concerns and I made sure we went over all of them. Turns out he had my BRCA results in his notes at my appointment in late September! But he didn't share them He had the gall to suggest that maybe he did and I didn't remember. Um, no! My husband comes to ALL of my appointments, and when he was out of town my mom came. We had been waiting and waiting for those results, for me and for our daughter. He finally stopped being defensive and acknowledged that they hadn't been shared. He was also able to hear me, finally, when I mentioned that I had been stuck twice at my last visit: a finger stick before meeting with the PA, and then a blood draw afterward. I suggested that being stuck once would always be preferable to being stuck twice and wondered aloud why that didn't happen. I also brought up being called at nearly 5pm to go to the hospital for a blood draw (and the lab closes at 6). It wasn't a problem that time, but sometimes I'm not home around that time and then what would have happened? I basically told him that I felt like my actual treatment protocol was clearly working but I that I didn't feel 100% confident in my treatment over all. I think that really got through. The kicker was when he asked me what I wanted to try and tweak this time around in terms of steroids and other meds when I asked if he had any options to offer. I almost lost it! That was what I talked about with the PA two weeks ago! I literally said to him, "Why did I even bother to talk about it with her if you two aren't going to talk about it?" He had no reply.
I do feel confident in my actual treatment, and the nurses and other support staff have been great to me, but if I had to do this all over again I'd look for an MO with a better bedside manner. Hopefully i have a big red mark in my file now and things will be double-checked in the future.
In good news, my counts were all high enough to go forward with round #4 tomorrow. Only two more after that...
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Nurseshark congrats! What a beutiful Biblical name Levi (tribe of Jesus and tribe of worshippers in OT) Emmanuel ( God with us). Love it!
Cassie I feel like my actual MO is clueless half the time.She knows her stuff but her not so much her patients. They need more Mo's here. There are 5 in the one hospital network and that's not nearly enough, unfortunately. They see over 20 patients a day from what a chemo nurse told me. It is frustrating, but fortunately all the other members of my team are spot on. sounds like yours are too. I'm surprised the lab itself didn't send you your results...I had them at the same time ad my MO. I bet that was frustrating!
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Hi amy, how are you doing?
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Cassiecat= The genetic counsler called me with my BRAC results. Didn't you get counseled first? Hope things go better wiht your MO. I did not like that. Keep a list of questions when you go. Just keep asking them over and over until he answers. Shame on him.
Justamy=Hope you are feeling better.
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Feeling better today. No fever finally after a miserable night last night. No GI issues. No bone pain.Eating regular hospital food and it tastes good. I got another nepagen(sp) shot today. They are still pumping me full of antibiotics. Still think I'll leave Friday. Doing CBC tonight. Good Surprise today: my husband went to work and they told him that he should be with me so he came up and visited.
All in all getting better...glad I went to the ER when I was doubting myself!0 -
Justamy, I'm so glad to hear you're feeling better! And how nice of your husband's job to be so supportive.
I didn't get anything in writing about my BRCA results and no genetic counselor called me. So odd. My MO actually called me a little earlier, to go over some other things, so I guess the squeaky wheels gets the grease and all that.
I feel better this evening and am ready to face round 4. Thank you for listening.
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