Starting Chemo May 2019
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I was thinking about what several of you have said about feeling as though this is unreal. I agree. Today, while waiting for my blood draw, I was feeling compassionate towards the other patients in the waiting room. Then I had an epiphany. I am one of those people. Great.
Also, I have been on this weird, euphoric, adrenaline like high since I was diagnosed nearly a month ago. Can anyone relate?
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Happy, I don't relate in the sense that I also am feeling euphoric, but I sort of get what you're talking about. Both physically and mentally we're all different, and "everyone reacts differently to procedures and medications" including our emotional reactions. I've heard/read other women mention the fear that they have in facing this down, and I've had remarkably little fear about the process. I was not afraid of the surgery, am not afraid of the chemo, am not afraid of the radiation that will follow. If anything, I'm afraid of the cancer coming back, so I'm doing what I can to keep that from happening. Aside from that, I'm still in a pretty good mood most of the time and still laugh and joke, including about this horrible disease and its effects. A lot of people would find that pretty weird, too.
Enjoy the good feelings as you can.
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Happy Anyway, I get the high too... I think it might be from eating well and exercising more assiduously! But also from how nice people can be.
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Oh my Bklynesq! We are aligned! My chemo twin! LOL - I could have written what you just wrote! I woke up thinking about driving to Dayton (20 minutes away) to go to Smales - which is a mom & pop soft pretzel shop! I got distracted before my appointment and didn't go. May have to tomorrow! Instead I went through McDonalds (with hands on hips - defiantly) after my appointment and got a hamburger. It's what sounded good dammit! Then on my way home I thought 'man, it seems like I have a sore throat'. Believe it or not the hamburger is sitting okay. I thought for sure I'd be regretting it big time - but so far so good. (I think it was the hands on hips).
I pushed the nurse practitioner to run labs (she wasn't going to). WBC (2.8) and RBC (3.88) are low but not ridiculously low (yet). She said BP wasn't too low - and if I got dizzy then I should go to the ER (meaning then it was probably too low). She said by day 10 I should be feeling better - UGH! 3 more days!
Agree - it's nice to know we're not alone. I appreciate everyone being candid and sharing as well.
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MountainMia and santabarbarian, thank you both. I'm just trying to sort everything out and be in the moment. I want to work through this emotionally and physically.
Right now my mind is on AC. I'll probably start researching Taxol soon. My MO has questioned a lymph node that is not accessible by surgery. He said that he doesn't want to "crack my chest open" to to have it removed. He is leaning towards mastectomy and radiation. I'm disappointed because he wasn't able to see me on Friday. I want to know if he feels the same after receiving the results of my CT/PET.
I am so happy that my white count is where it should be. I am clear for my second treatment on Friday.
Yes, there have been many kind people placed in my life because of BC. For that, I am thankful.
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HappyAnyway - the waiting is so difficult. My thoughts are with you. Good that you got the WBC straightened out and you are clear for another round Friday. Keep us posted.
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HappyAnyway - your post about getting thrush helped me! My mouth and throat were hurting yesterday, but I was almost thinking it was allergies (should have known!). I woke up today and was having a hard time swallowing. My NP had an email waiting from me when she arrived explaining my symptoms. They called in Diflucan and "Magic Mouthwash" (yes, this is a thing) and now I'm waiting for it to clear. So, ladies....if the inside of your mouth is hurting and your tongue and cheeks are grayish/white, you might have thrush! It's a single pill to clear it up, but seriously do we have to do this every round? UGH!
Of course, everyone at work today was so sweet about my hair. I didn't run into anyone who didn't already "know", which was kind of what I was fearing having to tell a lot of people. I was way early for work today because it takes me 15 minutes to get ready now. Kind of has me questioning why I spend so much time on my hair! ;-)
I'm on cloud 9 right now because my oldest son is home from college. It was so hard to be going through this with him away. My family is all under one roof for the next three months and I can do this!!
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hello all~ joining you all as Wednesday I start 4 infusions of A/C the 4 infusions of T every other wee. Keeping super positive and focused on healing and beating this! You are all in my prayers. We got this!❤️
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Martha, that's great. Sounds like a good day.
We just had a text from my son. He's in the military and will do some training at the end of the month at a base a few hours from here. He said he talked to his commander and will get leave for a couple of days afterwards, so will come here to visit. He'll arrive on 5/31, which is a chemo day for me. If I'm amped up on steroids he might get more MOM than he bargained for!
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Hi just checking in, how did your first tx go? Hope all is well.
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hi Happyanyway and all, I sure hope your treatment goes well on Friday. I will be praying for you. I say a prayer for those BCO peopleI know and for those I don't. I have made a few special friends on these forums. My chemo starts tomorrow. It was totally unexpected to need it after lumpectomy and reexcision surgery. My Onco score came back high at 47. I guess I was not surprised, as my larger tumor was grade 3. Did anyone else with a grade 3 tumor have a high onco score?? I am IDC er+/pr+ and & her2 negative and mixed with DCIS detected at first surgery. I still show small focal DCIS in 3mm of margin, but will wait until after chemo to have that surgically removed. If genetic tests come back positive will just have mastectomy. Has anyone read Dr Susan Love's book The Breast Cancer Bible? Not sure if that is the correct title. It is in it's 6th edition and is supposed to give a lot of helpful information not seen on the internet. I ordered it yesterday. Another breast cancer survivor I met yesterday told me about it. Take care all. Pat
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Hi UpstateNYer Pat. Thanks for the prayers and good wishes. I start my chemo Friday.
I don't have an oncotype score. I'm triple negative and oncotype isn't useful for Er-. But as TN, I have a high risk of recurrence anyway. I looked at the stats predictor tool (UK govt NHS site) https://breast.predict.nhs.uk/tool
When I plug in my numbers and look at chemo vs no chemo, I have to do chemo, even with a small tumor, no positive lymph nodes, and good margins. I'll have 4 rounds of TC and then move on to radiation. What a year, huh?
Good luck tomorrow.
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Hope everyone is doing well.
I haven’t read that book upstateNYer, I’ll have to toss it in the amazon cart.
I went wig shopping today with my mom. We didn’t cry so that was good! I’m only planning on wearing it to work (I’m a nurse and don’t want my pts worrying about me) or special occasions where I don’t want to look different.
Getting the port placed tomorrow followed by a short haircut.
It still feels very surreal, but I’m ready to get this show on the road.
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Hi Mountain Mia, I will be breathing prayers for you this Friday. We will be on same chemo schedule week-wise. I will be doing T/C every 3 weeks. I need to report to the center next week as well for blood draw and to check me after this first treatment, probably to see white blood count levels and to check my tolerance , but do not need to go on the following weeks for subsequent chemo treatments. Is this the same for you? I was able to get my free wig from our local Cancer Society today. The volunteer there was so helpful. What do you plan to do with regard to hair loss? Hope that other SE's are minimal for all of us. Take good care, Pat
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Hi April0315, I will be praying for you too. Fyi, your local Cancer society will provide you with a free wig. I got a nice one today. Also they gave me a head beanie and t shirt. You sound like you have everything under control. Well of course you must, you are a nurse, after all😊 Feel free to pm me anytime. God Bless. Pat
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Thanks for the tips on the complementary wig! My mom bought the one I chose this week, but if I need another I'll certainly look them up.
My port is placed and it's just a little tender.
But today is my youngest daughters 18th birthday, and we are celebrating her today. All she wants is grilled cheese and tomato soup and to be 13, that girl just doesn't want the adult responsibilities! I have family in town for that, and while it's busy, it's been a wonderful distraction.
HappyAnyway, were you able to get your chemo today?
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hello, I believe happyanyway's txt is on Friday. My first one was today. It went well, but I am very tired with a slight headache this evening. I am fearful, as symptoms are to worsen over the next few days. I will soldier through. April, glad to hear that your daughter's birthday surrounds You with family. That is a wonderful distraction. Enjoy. Pat
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UpstateNYer - hope all is going well and you have minimal side effects. I found the first one rough - especially not knowing how it was going to hit.
HappyAnyway & MountainMia - good luck tomorrow - hope things go smoothly.
How is everyone else doing? G1973 - how are you holding up? TTrotter1 - have you had round 1? How are things?
My stylist came and buzzed my head today. It wasn't falling out yet but I decided to send the hair to chemo divas to make a halo wig. So I had to do it early. It also gave me control of the situation. It actually went better than expected. I had my melt down yesterday so I think that's why I didn't crumble today.
I also called the doctor yesterday and got another Rx for a different anti-nausea med. I think I'm just not pushing them to manage the digestive issues well enough. It has helped. I've felt a little better. I've noticed today that everything is drying out - skin, nose, lips. It's funny how the different SE hit at different times.
Hope everyone is doing well. (Loving the Mom stories - my son gets home this weekend also from school - looking forward to having him here for the summer) Something to look forward to.
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On dry skin, Aquaphor has been wonderful. I had to use it for skin toxicity while doing Taxol. I now use it from head to toe. Yes, it starts off greasy, but is quickly absorbed. My feet look better than they ever have - a little in the morning and some socks for a little while does the trick. I have the toxicity on my head, face, neck, hands, arms, and feet. Aquaphor has made it bearable. My RO wants me to use it for rads. Done!
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Thanks Annie60 - a friend gave me a small thing of Aquaphor. I will definitely give it a further try.
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Hey there Alicesneed,
Thanks for checking, I just had my port put in today it was pretty much a horrible experience but I'll live. Chemo will start on Monday I'm super nervous.
I hate to hear you had a rough round, what happened if you don't mind me asking. I hope that all S/E go easy on us all
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more family filling my house so that’s good. Staying busy and that’s good. Keeps my mind occupied.
TTROTTER we start the same day. My port placement was pretty rough too. My friend works there though so she went in with me and held my had the whole time as I drifted in and out of sleep. I didn’t think it would be so sore that night though. Happy to say today is a lot better. So hang in there.
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Good evening ladies, I see the forum has really taken off and a lot of valuable information being shared!! Fantastic!! Just giving an update on myself after my first round on May 2nd.
It’s 1130pm here in Ontario Canada and I’m finally feeling like myself more and more everyday. These pass almost 7 days have been hell! I couldn’t even look at the forum without getting extremely nauseated from the scrolling motion. New feeds,Facebook or anything bright and scrolling. The diarrhea is bounds mixed with bone pain in every part of my body. Know the feeling of letting out a pony tale from a long day? That was my hole body pain! I could shake the nausea. I was red all over my body and almost looked plastic and swollen. Blurred vision was another hassle and still is.
But today, was a great day finally feeling good. Had a pre op appointment for my port install and they had to draw blood, I was so scared. Why? I’m not even sure. I’m annoyed at this process I just want to be myself again. My hair thins in the shower, I’m gaining weight and always hungry even with the nausea! I’m just a weird mess lol
Almost time for round 2 and I don’t want to already! How do we keep going? I don’t want those SEagain!
-feeling defeated already!
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Hello alicesneed, first chemo went well. I have had a slight headache and somewhat of an upset tummy. But, am soldiering through. I expect the next couple of days to be rough, but trying to stay positive. My neulasta patch was a bitch getting off my arm. Hope to not react to it.
Veebee, hope things continue to go better for you. No one deserves to go through this stuff. Positive thoughts and prayers coming your way.
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TTROTTER1 - I think the worst for me was that I expected to bounce back quicker than what I did. I'm healthy, blah, blah, blah - but it took me down pretty hard. The worst was that I just couldn't get a handle on the nausea, upset stomach & diarrhea. It was a continual cycle. I would take a nausea pill - eat crackers - stomach would chill so I would eat - 30 minutes within eating stomach would start tossing and turning then I would have diarrhea. That went on from days 3-8. I just couldn't seem to get ahead of it. I finally called doctors on day 9 when I was an emotional wreck (after loosing 7 lbs) and told them I needed help. They gave me a Rx for another nausea med so that has helped. I haven't met with the doctor yet - I do so on the 15th and plan to talk through this with her and see what I'm doing wrong and if I should be doing things differently or if I just need to suck it up. I can deal with the dry mouth and icky tastebuds, dry lips, skin, etc. but the stomach stuff is rough. I also had no appetite days 3-5.
Those who had ports put in - it was much more of an ordeal that what I expected too! It was actually more painful than my bilateral mastectomy!
Like VeeBee - I feel defeated too. Gotta get a better mindset somehow to push through. I still have another week before round 2 but dreading it already. My girlfriends gave me a gift card for a massage - it may be time to cash that baby in.
Will be thinking of all of you starting today and Monday!
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Hello everyone. I hope today goes well for everyone. I'm sorry for those that are not feeling well.
I'm getting my treatment shortly. My port has been accessed. Just waiting for lab results before starting. I didn't apply enough emla to my port this morning, so it stung just a bit. Nurse said to apply a quarter sized amount next time and don't rub it in. Just cover with plastic wrap. Hope that helps some of you.
Hugs to all.
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hello Happyanyway, I am saying prayers for you and hope your chemo day goes well. I had a rough night. Got very little sleep, but will soldier through. My pulse rate was at 45 last night, but blood pressure was fine. Not sure if the chemo affects pulse rate. I will speak to the nurse practitioner next week. May I ask a question to anyone? Were you told to stop taking your vitamins/supplements during the whole chemo routine?? My MO first told me that vitamin D and c were ok, then told me later to stop all supplements during chemo. April, Alice, Veebee, ttrotter, mountainmia, and G1973 hope you will get through these darkened hours. I can say this, because I am right there with you all. marthamw enjoy your son's being home from college. Hope your thrush has cleared from you and the others who have had to deal with that . Happy Mother's Day weekend. Hope you will all be pampered in some way. Take care😊
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My MO is fine with me taking b12, d, multivitamin. I also take zinc, melatonin and a probiotic.
Get well!
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My MO won't let me take any of my vitamins/supplements. I've been pretty bummed about that - I was on a good regime from a Naturopathic doctor and was feeling really good. Oh well...this too shall pass!
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thanks , happy and Alice for your input about supplements. I am looking forward to receiving my book today by Dr. Susan Love , The Breast Cancer Book. It is supposed to be very informative, things to know that you can't find on the internet. I will post anything that I think would be of use to us. Take care. Pat
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