Starting chemo July 2014
Comments
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Blownaway I know how you feel. I am in the same situation. My husband has been very supportive but just like you I have been doing everything. The same goes for work, it's like people don't get it that we are moving slower and can't do everything we did before. They care about us but sometimes they forget that we need a little more help.
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Regarding helping others...I think Coyote hit it on the head. I say now to friends that I know how to respond to others in need. I don't think I had a clue earlier, even though I thought of myself as a thoughtful, caring person. Once you're on the wrong end of this you understand what needs to be done. And it's not just cancer. A serious accident, a long term illness, etc. I can now see what needs to be done. A connection needs to be made even if it's just a card or a phone call. My friends all quizzed me on this (as they've fed me and my family multiple meals for months) about how they should react, and what was the best thing I've "received" since I've been ill. They really wanted information so they could do the right thing for others. I think just reaching out is key.
Blownaway - I shouldn't laugh at your yelling at hubby story but I can so see my DH in the same position. They think they're helping out, but not really getting it. Very funny to me.
Anyone have their Vitamin D levels checked? I heard there's a correlation to cancer, though no direct cause, of course.
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KiLin -- Congrats on finishing chemo!
melrosemelrose -- Yes, I'd been wondering about Chaosrains -- hope surgery does the trick and that recovery goes well.
Help from hubbies -- my husband does his best, but I need to tell him what to do and when things need to get done. He doesn't just "see" that the laundry is piling up and does it. I have to say, "Hey hon -- could you wash some coloreds today?" Likewise, I have to give him lists to take to the store. But, it could be worse....
Help from friends -- I'm getting better about asking for what I need. After eight rounds of Taxol, my taste buds are dead and bland is best. I've been asking my devoted lasagna bakers just to get us turkey sandwiches from Subway. That's better than letting lasagnas rot in my refrigerator because I'm too whimpy to say what I want.
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YAY Elaine 8 rounds of taxol done - so happy for you. Only 4 more to go.
Oh and to everyone my hubby is the same way lol. He tries and then reminds me he has one day of workout clothes left - meaning it's time for me to do that load of laundry. I sometimes remind him that I don't just have the common cold lol
Nancy
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I know Pink and I will be in December, so ... I created a December 2014 Surgery topic. Anyone else? https://community.breastcancer.org/forum/91/topic/826070?page=1#idx_1
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Klin - YEA last day of chemo is the best, next few days yucky. Blown - I have NO IDEA how any of you are going to work while going through chemo. I can barely make it from my bed to the car to get the kids from school. Have to lean on the island while cooking dinner. But, your account of your husband, YEP, I've got that one. I guess because we can stand up, and haven't lost 50 - 100 lbs and don't throw up 24/7, we should be doing all else. They know we have cancer, but we don't look sick enough for a change in behavior from those around us. I mean, my husband has done some things, but I don't think they 'get it' as to what we do and I don't think they care. I'm amazed that the counter is always full of crumbs, that my cabinets have food spills and finger prints on them, that the inside of the microwave is yucky, but I don't think he sees these things or if he does he doesn't care. I'm grossed out and can't make myself anything to eat without cleaning it up some.
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kiLin wanted to congratulate you too on finishing chemo. You must be thrilled
Nancy
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Congrats to those finishing chemo. I have a few more to go. I should finish the beginning of December. I've developed some intermittent chest pain so they skipped the herceptin yesterday and made me go see my family doc. It's a lets wait and see type deal.
I've noticed in the beginning, when people found out I had cancer they were sympathetic and offered help. But now I never hear from any of them. I have 3 friends that have consistently made an effort to get me out of the house, take me to dinner, send me cards and I truly appreciate their kindness. I have felt so removed from myself through this breast cancer that I barely feel like a person anymore. These moments remind me I am still me and there can be some normalcy.
What hurts me the most is the absence of support from my siblings. My brother never asks how I am, in fact he hasn't talked to me since July. And my sister sort of acts like it's no big deal and I rarely hear from her either. She lives 5 minutes from my house. It's hard not to get depressed by their lack of compassion. Our parents are both deceased so I don't have them to lean on either.
My DH does his best but I do the bulk of the housework. If I ask he will do it but he also turns a blind eye to dirty floors, laundry piles, dirty microwave and countertops. Maybe it's a guy thing?
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I could have sworn I posted an update but now I see I didn't. I went for ultrasound on Tuesday, for a couple of lumps the MO didn't like the feel of, along the surgery scar on the non-tumor side. The radiologist can't rule out cancer in them so I'll have biopsies on November 20. The MO told me when I last saw him that the precancerous cells they found on that side were the kind that would certainly have grown into tumors. (He had a term for it which I can't remember.) The radiologist's concern is that the mastectomy may have left sufficient breast tissue cells in place on that side that I could have tumors there. Or it could be simply scar tissue. Not a seroma though. The breast tissue on the tumor side was completely removed, including part of the chest muscle. So I don't know what all this means in terms of when I'll start rads. I'll see him next week. By the way, my insurance company has denied proton therapy on the grounds that it is considered to be experimental for breast cancer. I think this can be appealed, but I don't know if we will or what the process is.
About the husband issues, I have an observation and theory. I know that I am blessed with a husband who is very independent, for one, and pretty helpful, for another. In our 27 year marriage, he has ALWAYS done his own laundry and ironing (I think because when we got married he was in the military and very particular about his uniforms). And he actually helps out around the house. But here's where he falls short. I tell him I have an appointment. He can't remember. "You what? When?" I think it's all part and parcel of the same syndrome, and that is denial.
Cancer is a tricky thing. Breast cancer even more so, because there are so many stages, grades, tumor size, lymph involvement, hormone, HER2, etc., etc. I think they will always try to minimize the seriousness of our individual cancer situations because they are not willing to face the possibility of losing us to this. If they treat us like we are actually sick, then they have to face the possibilities.
It's like another thing that used to bother me a lot. If I complained about something, and it could even be something really serious, DH or my cousin (or other family members and friends) have a tendency to say something like, yes, I have that too. I used to think they were trying to one-up me pain-wise, but I came to the realization that it is their way of identifying with me. Having come to that realization, I figured out that if I don't want them to do that, I just need to not talk about what's ailing me - unless they ask, of course. My cousin does, DH does not.
Congrats to you who have crossed the finish line! The rest of you will be done before you know it.
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congrats on all who have crossed the finish line and moving on or to the next step.
I thought I was the only one with wierd family and friends. I guess I'm not. My hubby actually does lots of work, I don't know what I would do without him. On the emotional side that's another thing. Like Walle said, I couldn't help but laugh at blown always comment about hubby. Have felt that way SOOOOOOmany times with a few people.
I'm glad Chaos is in surgery. Did she decide on the mastectomy?
On another note, do any of you get tumor markers checked? Most of u prob don't. My ca 153 went up , so not too happy. It is one of those days when reality hits and I feel I have numberEd days. It's like I need to make a list of tHings to do that are fun. Any of you have these lists?
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hi ladies,
Glad to see so many of you are crossing the finish line, and big hugs to those still going...every treatment brings you closer...
Mags - very much in my thoughts. Fingers crossed this turns out to be scar tissue. Keep us updated.
Dancing diva - no tumor markers here...my MO basically does no scans or anything unless I have some symptoms. I'm honestly not sure if this creates more or less anxiety for me. Also hoping this is nothing for you!!
Good luck to Chaos and everyone having surgery this month and December. I have another TE infection so won't be able to schedule my exchange till Jan/Feb otherwise would have hoped to join you!
I am a couple weeks into tamoxifen now...no real SEs other than the menopausal ones I had already (hot flashes, Sahara-like conditions below stairs...), but man is it weird to know I will take this for the next 10 years. 10 years!!
Also...I really want my eyelashes back. Every day I search for little signs of them...nada yet...hopefully soon!!
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Wallegator: I wanted to have my Vit D level checked and my MO refused to have one drawn until I was done with treatment, I kept after her and she finally agreed to add one to the labs being drawn before my next appt in January
Lew doesn't "see" what needs to be done either, we have a list on the frig, I write the 3 most important things that I need him to do for me, sometimes also need to tell him how soon, or a week will go by and he'll say "well, I didn't know you wanted it done right NOW!
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Dancingdiva - I get my TMs checked with my blood work every 3 weeks. It's important to remember that it's not each individual number that matters, but the general trend. Mine can fluctuate up or down about 30 points at any given time and it doesn't mean much in the grand scheme of things. If yours goes up again on the next check, I'm sure your doctor will get you sorted out, but try not to worry til then.
Congrats to all of you who have finished chemo and/or rads!
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I guess as far as DH issues go, mine is a bit different. He does absolutely everything; he does laundry, irons all the clothes, cleans the kitchen, vacuums and mops the floors, cleans the bathrooms, cleans the pool, fixes breakfast, makes my coffee; cares for all the animals (including kitty litter boxes). If he is aware that it needs done, he does it. When I needed to take nausea pills in the middle of the night, he set an alarm to be sure that he was awake to assure that I got them. He took me to every doctor appointment and every infusion. He read to me, changed my ice mittens, and lotioned my feet.He is not food aware (I think he would starve to death if food were not placed in front of him), so that became challenging when I was really down and out.
Every day, he tells me that I am beautiful - hair or no hair - and that he loves me beyond all things. I try to be careful and not say too much about what I think we "need to do" because he takes it literally and adds it to his "To Do" list. I have learned to ask for what I really need, because he can't read my mind. Sometimes we think if "he really loved me, he would know how I feel". This man comes as close to that as humanly possible, but even he isn't at 100%.
Yes, he is pretty wonderful. He is also a kind, loving, funny, considerate, and intelligent human being. Everyone else adores him too. I am beyond fortunate to have him in my life - and wonder at times how I did that. If there is a problem, it is that he wears himself to a frazzle trying to do it all. He doesn't understand that everything does not have to be done right now. Wifey's PJ's do not need ironed. Sometimes, I feel pretty guilty about what I don't or can't do.
Hope sharing all this is okay.
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mags I am so sorry you are going through this. Hoping those lumps are nothing but benign.
Nancy
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Hugs to each of you and sending healing vibes out to Chaos.
I have 3 more rounds of Taxol to go.
Anyone feel kinda 'sad' about stopping chemo ? I ask this cause its going to feel weird not going every week like I have been these past 3 months! Believe me, I want it all over and done with!
But then I have a thyroid biopsy on the 25th which I hope is nothing, but the spot they saw on the PET scan has not changed since June. I can only hope it turns out to be OK.
Been lucky I have not had any side effects at all during this journey. I feel for those of you that do/have and I pray those going through rads now, no burns and the lotion/aloe vera really helps.
What brand(s) of lotion do you suggest? I have heard of Aveeno. Using Ivory soap as well after rads.
Take care everyone.
Hope you all have a great weekend!!!
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AJ: seems like each RO has a preferred cream, ask yours before you buy a bunch ahead of time. I'd heard so much in the forums about aquaphor and had bought some, also bought aloe vera gel. Had Vanicream on hand that I'd used for dry skin over the years. My RO said I could use any of the creams I had on hand, I chose to use the Vanicream as it wasn't greasy on my clothes. It's worked well for me, skin hardly changed color and no open areas or problems.
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Puffin2014: Thanks so much! I have a meeting with the RO in a few weeks and will be asking questions as they go back over their rads plan with me in January.
It is nice to hear other's stories about what worked for them and what didn't as I know we're each different.
Did anyone ever wear a bra to appts. after having a full one side mastectomy or not give a darn? I am having my left boob removed. I am sure a follow up appt. will be given for me to see my Surgeon a week or so later, drains flopping too and fro ... LOL ( I will pin them to my shirt actually -- I am a joker as you can tell !)
That I am a bit self conscious about as I am a big girl with some big boo-doos!! LOL Not something I can hide unless I wear a jacket but this warm high 70's and 80's Florida weather... not likely I will be wearing a jacket ! Ha !
Just wondering how to 'fill in' that area without pain as I do not see myself wearing a bra a week or so later. Should I get a sports type bra to help cover and put a sock in there? LOL
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Hi AJ: One of the things my surgeon gave me before my mastectomies was a prescription for bras that have pockets for padding and/or a breast prosthesis as well as Velcro-on pockets for drains. He wanted me to have the bras prior to surgery because that is what I wore while I healed from surgery. After the initial front opening post surgery bras, I purchased some other bras from the same store (insurance covered them) and those also have the prosthesis pocket. Now I wear regular ones.
I start radiation treatments tomorrow and haven't decided what will work best...I might use the original front closing post surgery cotton bras. They are soft and don't bind anywhere.
I hope your surgery goes well and you have a speedy recovery.
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Mags - fingers crossed the tumors are benign!!
As for family/friends- first let me say, I have the most amazing fiancé who made going through this a lot easier. He also had to apply cold caps while I got chemo which was switched to weekly taxol after my hospital stay. My brother on the other hand....sucks!!! We were close...asked him to walk me down the aisle since my dad died is 2006. I was in the hospital for 12 days....not a weekend 12 days!!! He showed up on my last day as I was getting released only because my fiancé called him and said I was really hurt. When he nurse asked him if he was taking me home he said he had to leave soon....he had just arrived 5 min earlier. He actually tried to blame me that I didn't let hom know it was serious. When is cancer, chemo, an infected port and being in the hospital for more than a few days not serious????? He actually wanted a medal that he showed up for my bilateral mastectomy....he lives 50 min from the hospital. Oh and said I didn't show up when he had shoulder surgery...which he didn't even have an overnight in the hospital....it was outpatient. We have not spoken since... Now I don't know who is going to walk me down the aisle next yr
Anyone do reconstruction yet? My tissue expander swap for implants is scheduled for 11/25. And I start Tamoxifen in about 2 weeks too.... Except for tamoxifen and Herceptin, I am hoping to have most things done by 2015!!!!
Congrats to all that are finishing chemo. For me, I lost my eyelashes post chemo....chemo is the gift that keeps on giving!!!
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I guess it's my turn to be in the hospital. Been having chest pains and shortness of breath. Doing more testing later this am. Oh what fun. I don't know if I'll still have chemo Wed. Hope my oncologist stops up here. Take care all.
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Jennliza, idea for you walking down the aisle ... I had no one to walk me down the aisle as my father was a jerk, emotionally abusive & wouldn't do it. So, my then husband to be and I decided to meet half way down the aisle and walk up the aisle together. It worked out well & I felt very comfortable with the whole thing. My mother offered the day of the wedding but we went ahead with our plans & she was o.k. with it as well.0 -
Maidentired - I hope they get you sorted out quickly and it's nothing too serious. Thinking of you.
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Maidentired, I had that same stuff going on about that same time – a few days shy of my 6th ACT chemo. They never found a cause, but I read in the info packet they gave me that one of the chemo drugs can have that SE. They did xrays, ct, echocardiogram, blood cultures, and lung function tests. Found nothing to account for it. Just FYI.
I see th MO today for 3 week follow up PFC, and blood work. Will be interesting. May get answers on rads questions and u/s.
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Maiden keep us posted - sending happy healing thoughts.
Mags - what is PFC?
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PFC: post final chemo.
Just back from MO. I have mild lymphedema in my upper arm, so have been referred to LE specialist across the hall. Appointment next Monday morning. He also wants me to have a PET scan before the end of the year. Seems every time I go I learn something new about my cancer. My right breast had "atypical ductal hyperplasia" which I understand means "if you don't get rid of the breast now it will turn into cancer at some point." Today I also learned that they had some concern about nodes on that side.
At this point, I just don't ask. Don't know if I want to know more.
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Jennliza -- sorry to hear about your brother. No, no reconstruction yet. I don't even have my surgery scheduled!
maiden -- hope everything has tested out OK and that you can get out of the hospital soon!
Mags -- hope that you get better news soon, especially re: those lumps near your incision. Good thing you got a BMX, no? What's an LE specialist?
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Lymphedema specialist, it's a physical therapy specialty.
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maidentired-I am sorry you are in the hospital. Hope they get to the bottom of what's going on. I also hope you get to go home soon.
Mags - sending more good thoughts
Nancy
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Maiden -- my thoughts are with you and hope you get out of the hosptial soon after they get to the bottom of what is causing the chest pains and shortness of breath.
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