Starting Chemo, November 2013 Group
Comments
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Reading the recent posts brings tears to my eyes and makes me recognize (once again) how grateful I am that I came upon this site and I have "met" all of you!!
I hear what everyone is saying and I know we ALL have similar fears about treatment, recurrence & death. I know there are stages and phases in this struggle and I know we will get through this. I completely relate to and empathize with the fears so many of you cite about recurrence...that's where I am stuck right now. I know it might sound irrational to some but I am more fearful of the FUTURE than I am of the PRESENT. I KNOW I NEED TO LIVE MORE IN THE PRESENT. I am working on it!
I also rationally know that much of how we deal with our diagnosis is relevant to all the other things going on in our lives, past & present. Our personalities, the way we usually cope, etc, etc...it all ties in.
Prayer seems to help me a lot. I know God will manage things in His time, not mine.
This is where He wants me to be right now. No question!
Feel better today everyone! And thank you again for caring.
I am grateful for you!
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I can't seem to get myself going today. DH is snow blowing us out and the girls are shoveling and I am on the couch. I always feel worse mentally when I feel lousy physically. Like I do now. I hate for my family to see me this way. It really is depressing. Jab, your husband is right, we are fighting the effects of chemo. But is because of the cancer. I am fighting and will fight this, but the thought of it coming back is scary because I would have to do this again. I always feel better when I take a walk but I am too dizzy and it is 7 degrees outside.
I love cruising and have no fear of the food. The food is great. We love Norwegian also. It's a great way to see really pretty places.
Bec, I may be wrong, but a metastasis is when the cancer goes to a different location. A recurrence is when it comes back to the same place.
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Pat: I liked your Bulgarian connection, but now you have gone too far southeast. Think more central.
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I think I have heard that as well about metastasis...as someone had it metastasize to her lymph nodes later?? I'm not sure either...and just talking about it today has me worried again...
I think the more we get out and do other things the better, for me anyway..and being in house, on couch, dizzy or sick or tired is not helping matters! I am looking forward to the end of the chemo and feeling better physically, that just HAS to help mentally!!!
Obviously I need to see my counselor again, haven't since before last chemo...as have been out of service - Ha!
When you read about breast cancer online in just any search the odds are great now for survival! And my MO said the 5 year thing they chart is old and he knows the majority of his patients have survived 20 years plus...the statistics just use 5 years which seems not very positive...
This toxic poison HAS to work!
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Tonilee: In our struggles, we need to find the strength to trust. The trust may come in different forms: trusting God, self, medical staff, or a loved one, we need the trust to help us get through our difficulties in life.
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OMG...amazon...you must be PSYCHIC 'cause I wrote an ENTIRE (too lengthy) post about my inability to trust anyone (but myself). Long story...too long to post, so I deleted it. Inability to TRUST is part of why I am so isolated...part of why I became so fiercly INDEPENDENT!
You are a sensitive woman, you read "between" the lines.
Perhaps, I'm too transparent-lolololol!
No...I'll give you the credit! You really are special...I like you a lot-smile!
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Audra - We are here for you. What ever you need. Don't worry about saying anything 'wrong'. There is no wrong here. Regarding friends, I have a few friends I have shared this with but that was only half a bottle of wine. (Ok I know we are not suspose to drink but it was the New Year...) Anyway, I am still of the opinion that it is very hard for other to really understand unless they have had a similar experience. That is why these boards are so great and important.
I asked the question a while ago of my BS about is it metastatic in your lymph nodes. It is considered 'locally metastatic'. However, you are not considered to to have metastatic cancer. That is only when it has spread to other organs.
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Tonilee, here we go opening up. I had a difficult upbringing, Hah! Both of my parents had personality disorders: I learned early on to "trust no one." I've spent my life cautiously letting in only the few, distrusting others' motivations, keeping up a mile high wall of reserve. Just before my diagnosis I underwent therapy for my ptsd. It's amazing how, despite this nasty disease, I feel opened up to people. I only wish I could have underwent this change when I was younger, but c'est la vie. If you want to discuss this further, private message me.
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Lissy- I have a TE since Sept 30th. The final filling was done the beginning of Dec. I find out in 2 weeks when PS will replace it with the implant. I can't wait till it's finished. I get zingers once in a while.
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Hi all! I'm starting AC-T on Jan 16. I've been really scared about "chemo brain." What were your experiences with it, either in the workplace or on the home front, and what seemed to help? Thanks so much in advance.
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@ VIRGINIA and VERONICA : My experience is the same with tissue expanders, tight like an ace band-aid tight around them, specially after each chemo. Cant sleep sleep on my sides and they are just so uncomfortable. Can't wait to get them out!
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Lissy - I have found that it's finally more comfortable on my side - but I feel like I can feel the saline moving around when I bend over.... The TE's are also hard and I hate feeling the plug lol. My ps told me 8 weeks from my last chemo is when I can do my exchange. Planning on the cohesive gel (gummy bear) implants. I heave heard good things about them.... I will call next week to get on his calenar.
Have you decided on an implant type? Veronica, have you? I am a bit nervous about that next step.....
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My tissue expanders are uncomfortable as well, I've only had 3 fills (stopped the fills during chemo since it was just too much) but they are in my armpits. I can sleep on my side.
Amazon - are you Polish? I'm estonian, Estonia's gift to the world was Skype. I went to the same school as the creators of Skype.
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paloverde- I only have chemo brain for about 4 days. I am out of work they day of chemo (Friday and go back the folowwing Thursday. I sm able to work and function, I'm a dental hygienist and also do a lot of charting and do fine
Virginia- I have decided on the silicone. My PS says they are safe and they feel so much better than saline.
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Ladies~ from what I hear, the breast implants are a huge relief and much more comfortable than the TE's. Remember, you've already undergone mastectomy or bilateral mastectomy, so the implants will result in similar (perhaps lessened) discomfort and pain...plus no drains! Actually, implants will likely be easier for you than mastectomy 'cause no tissue is being removed...nothing is being taken away or cut away...less pain, less swelling, less discomfort.
An issue for me is that I've second guessed my decision to have a lumpectomy to remove my tumor mass (versus a left-sided mastectomy). Frankly, I felt a bit bullied and rushed into the decision by my breast surgeon.
I'm gonna re-visit the issue when I see my MO for my pre-chemo visit this upcoming Monday, the 6th. I am actually re-thinking if I should have a mastectomy prior to beginning my radiation therapy (when I finish chemo). For me, it has to do with the risk for local recurrence with a lumpectomy versus mastectomy. I'm concerned about the margins my BS obtained with the lumpectomy but again, as y'all are seeing, I TRUST NO ONE-lololol...big issue for me.
But I'm workin' on it. This is gonna be my new mantra-lolol. I'M WORKIN' ON IT!
If someone out there can answer this...so much information, I cannot recall the answer specifically...but if someone can answer this, I'd be most appreciative. As I understood it, the chance or incidence of local recurrence (recurring cancer in same site, same breast) is statistically insignificant with lumpectomy versus mastectomy (if a woman is a candidate for lumpectomy to begin with)...under 9%...9% doesn't seem insignificant to me but so I am (was) told. Instead, recurrence is more complex and has everything to do with staging, grading, size of initial tumor, node involvement, ONCOTYPE SCORING, vascular invasion of tumor (in nodes and at primary site), receptor site specifics of primary tumor, tubular status of primary tumor, etc, etc.
Any thoughts? Thanks!
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Paloverde -- I am 61 and for me "chemo brain" is just a bit of an exaggeration of the "where are my keys?" phenomenon of getting older, or the way we react when under stress. I joke with my medical oncologist that my major source of exercise is going up and down the stairs in my house because whatever I initially set out to do, I tend to get distracted and it takes 3 trips to do what I intended in the first place.
There are some simple solutions -- making lists, trying to do one thing at a time, taking it easy, etc. -- Ellen
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Paloverde, so sorry you need these discussion boards, but glad you found us. I think you will find -- as I have! -- the support here to be a truly blessed source of comfort and nformation.
The two of us have almost identical diagnoses, but I was randomly assigned to get Cytoxan/Taxotere X6 instead of AC/T in a phase 3 clinical study that's comparing these two treatments. I'll be very interested in your progress! I had my first chemo at the end of October about the time you were diagnosed, and will have my last infusion on Feb 10, followed by radiation.
My experience is similar to EllenKCs, and we are of similar ages -- I'm 66. I don't think I've had any special "chemo brain" issues -- although perhaps my DH might disagree;-) Any forgetfulness I've had since starting chemo seems less a physical SE than a function of the emotional upheaval that a life-changing illness represents. Everybody's different, but I'd try not to worry too much about it until it really happens (easier said than done, for sure).
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Toni - yes, that is what Sloan told my and why they were not in favor of me removing the healthy breast. I can't quote the statistics for you... I just know I couldn't deal with the waiting for it to come back a third time if I left the healthy breast. For me it was a matter of emotional choice (losing a mother to bc and having it 2x myself). I know I can never eliminate the chance of recurrence or mets, but it was def the right thing for me....
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Tonilee, Pat: A lack of trust may lead us to a feeling of isolation, which may be adverse to our overall well being. I found that after my dx, I talked and opened up to a lot more to people. I realized that there are countless people who deeply care about me. That realization was also a relevation that if I want to live my life to the fullest, I need to build that TRUSTing relationship with God and people.
Perhaps, this message board is a form of therapy for many of us, who are searching for that open and honest dialogue with people who care and understand.
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Virginia...I so hear you about another recurrence and the overwhelming fear! I would have done the same thing, given that I'm (almost) ready to do it at my point in life. I completely understand. I think you made the 1000% best choice for you.
Hey...just realized (as an aside) my surgeon told me that "if there was a recurrence in my left breast in the future, a bilateral mastectomy would be the only choice, and wisest choice 'cause 1) I'd be considered higher risk & high risk for occurrence in right breast, 2) same breast...left...couldn't be irradiated more than one time, so it would have to be removed."
Sounds like we're getting good, sound & consistent advice/treatment form NYC and Ann Arbor Michigan! MSK is a great hospital. I visited a few friends there when I lived on East 18th Street (off Second Avenue). Lived in NYC for nearly 13 years and prior to moving here (husband's work) in 2006. My husband, John has family in Mountainside, Greenwich CT (from Larchmont) and all over the Elizabeth/Linden area. My husband was born in Elizabeth and lived in Linden 'til he went off to college. My sister still lives in Metuchen. John also has a sister in the Philadelphia area.
amazon...I totally understand what you are saying about trust and isolation. I know it is something I need to work on. Thank you for replying!
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Toni - yes, mast was the only choice for me bc the cancer came back in the same boob - so no rads for me either since I already had them.
glad you are getting good care in MI. I do not take for granted one second how lucky I am to go to Sloan Kettering. It is truly an amazing institution!!!! I am in the northern most part of NJ (close to NYC) -
inks: No, I'm not. You need to head a bit south from Poland.
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Virginia, Veronica, Lissy, Audra & others with TE:
Are you going to have rads after chemo?
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Me today, during my last AC. I also feel that I have lost the sparkle in my eye. Face is much puffer than it used to be. I haven't gained any weight but I suppose the steroids are adding to the puffiness. I have lost a ton of muscle tone, legs and bottom are now soft and mushy.......lost my tan from being outdoors so much. Before I started Chemo I walked/jogged five days a weeks, 5 miles each time. At least two times of that was walking / hiking up Rib Mountain which is a beautiful hike and great Cardio workout. Also rode our horses couple times a week and cleaned barn daily. Now I am lucky if I walk to the mailbox after work to get the mail,lol. Chemo has left me weak and breathless. I had chronic Asthma before starting chemo. Now I am even shorter of breath and get chest pains on left side and armpit often. Maybe from port placement?
Sorry for the poor me pity party. Just want my life back........hope Taxol will be easier and I can at least get out to the barn with my fur kids more. Our cold winter isn't helping either, fifteen and twenty below has been normal around here and Monday schools are already closed due to temps with wind chill reaching 40 or more below zero.
Pam
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hugs Pam - you passed a huge milestone today!!!
Amazon - no rads for me - I had them in 2007 and cannot have them again.... I think rads mess with the TE's and implants...
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Just for tonight, there is no cancer, there is no chemo. I don't feel crappy. It's cold and dreary outside. I have a blazing fire going. I have a soft comfy chair. I have a sweet dog laying by my feet. And I have the latest Stephen King novel.
Just for tonight, life is all good.
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Northwinds, I too have been feeling tightness in my chest/lungs, but I have never had asthma. Kind of like being in a smoky room, or how you can feel your lungs when you take a deep breath on a cold day. Occasionally running out of breath at the end of a long sentence.
Had lungs listened to twice this week -- radiation onc Monday, and then nurse practitioner Tuesday before chemo -- and both said the lungs sounded clear. Feeling persisted, and this morning a lot of dry coughing.
Seems silly, but I finally tried some Vicks Vaporub, which seemed to help. Loosened up some phlegm, seemed to relax the chest. Could be all in my head, but I do feel better.
Ellen
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Virginia: That's what I was told by my PS as well, that if you will be needing rads, it's best to wait for any reconstruction after the rads and when your body is healed.
Pam: Congrats to finishing your last chemo! You will recover to your former self. Time heals.
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Tonilee, Pat, - I as well have trouble with trust, horrible childhood, parents quit talking to me 16 years ago after I requested they quit talking about my ex husband and everyone else in the world(gossip) when at our home. My ex husband, high school sweetheart, was alcoholic and abusive...my girlfriends from high school deserted me when I divorced him as they were all married to his friends and they chose them...and then I met and married my darling husband...thank God! But moved out of state to California...our kids went to a Baptist private school and we had HUGE issues there, with ultra Baptist everything!!! SCARED me to be a Christian! Got some great friends and then moved again 5 years ago here to Texas and had to start over...haven't made as many close great friends and sortof tired of trying and starting over...but sad now as I'm here with this and everyone close is far away....
I DO trust Jeremy, our surgeon friend, and I DO trust my husband and God....so those are the ones I'm banking on...
PLUS - worked as a nurse and I think that makes a little more questions instead of just relying on what a DR may say...
You all looking to get implants = look at this site- it is our family friends and he did my surgeries - it has a ton of reconstruction information and videos and options...
www.parkmeadowscosmeticsurgery.com
My wbc were 24,000 today, wow does that neulasta work!
I cried at the visit...went to get blood drawn, the usual (only girl ) that can take it without 3 pokes wasn't there...well the other one, snotty little thing, said I wasnt' on the schedule...then she looked in computer, then she went in other room and came back and said go to infusion room they are supposed to do it there..
The Dr put me down to get it out of my port since they were poking me 3 times or more each week...but last time I went the infusion room was packed and the nurse told me to get it out of arm as they were ultra busy and my phlebitis had gone down in arm...so I did..
WEll today, I went to infusion room and said they told me to come here, she said , I thought we discussed this last time and your infection was better, I said, yes, but they still poke me several times each visit...she said, let me look it up...I got teary eyed and was so embarrassed...well the other nurse noticed and said , it's ok we can do it in here...then the other one looked ashamed and said oh yes, I didn't know they were sticking you a lot...we usually don't like to draw as it can cause clotting...I was mortified...but so happy a few minutes later when no pain they drew from port and I was done! I didn't even use numbing cream as I was planning to get it in arm...I am so overemotional I could've died for crying. MY 15 yr old sweet daughter was with me and so empathetic and held my hand and reassured me....
Having this is so humbling.
Wishing you all great night.
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Congrats Pam! Yes, your horses are waiting.
Wally, I agree, I tune out regularly binge watching tv and movies! While watching them, all is perfect, I feel fantastic while transported.
Yes, trusting others doesn't come naturally, but I am seriously working on it. This C thing though, has been a bit of a jolt in that department. I've learned who my true friends are, and they aren't always who I would have predicted! I'm finding kindness and acceptance and support in the most amazing places. As someone who always depended on myself, now that I can't, and am willing to be open to others, I find how many people are generous and giving. If I look for silver linings (I'm not much inclined to be thankful for ANYTHING about this disease) when I finish this marathon I will be much closer to a lot of people.
Amazon, I'm going to go with Serbian. There are a lot in Canada...
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