MIDDLE-AGED WOMEN 40-60ish
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iatigger- My PS never gave me one or mentioned it. I will have to ask her. Thanks for the info.
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The surgeon who did my port also gave me a card and a little plastic card to put on my key chain.
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I am checking in after a bit of a break, looking to offer a little cheer to those doing hard things, like Eli: if anybody on this planet could understand and empathise with the treatment you will be having, it would, in my humble opinion, be the ladies on this thread.
Barsco, I am so glad your boy is coming home, there is nothing like having them in the same room with you! Dianarose, have a really good trip.
I am done with week two of radiation,and suddenly, since yesterday, feel like I got hit by a Mac truck. Sore, sensitive L. breast, wicked fatigue, weird nausea off and on, and, what throws me the most, trouble sleeping! I sleep really well, generally, and really need it now. I went to do errands today and dragged myself home after a hair appointment, utterly disinterested in my usual pleasant afternoon of errands. I am working half days but if this keeps up, work will not be an option for awhile. I don't recall any of this when I went thru radiation in 2003. Its scary. My brain feels all spacy and detached from its moorings. That's been happening some since diagnosis, but this weekend, wow!
Thanks for listening, and boy, can I relate to you, Nancy, and the unpredictability issues. /p>0 -
Glad to have you back MameMe! Hopefully the SEs will ease off for you as you continue rads - how many more tx to go? You have to remember that 2003 was 10 yrs ago. No offense but our bodies don't bounce back like they use to. Rest up when you can - maybe a sleeping aid is in order?
staynsane - I hope that you continue to feel well and that your flight goes without a hitch for you.
My boy is almost here! It's been a loooooong 2 days waiting and worrying. Thank goodness for modern technology. He has a gps on his cell phone and has been in constant contact with us to let us know where he is at etc. However, northern Ontario has quite a large area with no service - and lots of moose - worrisome when we didn't hear from him for that stretch. And when we did hear from him - he relayed a story about rounding a bend and 2 large moose in the middle of the road! YIKES Thank goodness he saw them in time. He should arrive home this afternoon sometime! Excited to see him!!!
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maryah, please don't assume you can't get LE!!!! I don't want to preach here, already have on another thread where two women then found out they did have LE!!! ANYONE who has even just surgery is prone. You've had 3 nodes removed. Same as me. I have truncal LE. My Oncologist found it - my surgeon didn't believe in it! I went to him for another surgery recently and he was a convert!! There is SO much more info now than there was even 4 years ago. It is very serious. And don't wear sleeves unless you are diagnosed!! You could cause LE if you compromise your own lymph flow. Sorry to be a bearer of doom, but please, everyone who reads this take care!
(I got a pacemaker last summer. When they found out about my LE they moved the placement of my pacemaker to ease the flow!!)
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Barbe ~ I have never assumed I could never get it, which is why I researched it before I flew.
I'm really glad I did because I was going to get and wear sleeves as a precaution! I now just stretch and move during flights and hope for the best. I am in a research study at Stanford where they are collecting information regarding LEs. I am aware that I am at risk simply because I had surgery.0 -
As you say, barbe, not to wear LE sleeves if not dx'ed with LE - that is why one of the things you do NOT do is wear tight sleeved clothing. Nothing tight under the arm pit area, no tight sleeved anything. No elastic on the upper arm. Clothing such as that will compromise our lymph flow.
Not a bad reminder to hear every once in a while to help spread the word that we are all at risk, even if not having had any nodes removed at all, but having had Rads in the area of nodes.
((E~))
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I have been doing some research on if you should or should not wear the sleeves while flying and it is very conflicting. Some sites say to wear them while others say not too. There is never any definate answer with anything to do with breast cancer. Even when I ask the MO a question he never gives a direct answer. The National Lymphedema Network says to wear one. WTH
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When my PT offered to order me sleeves I said, but I have truncal LE, why would I want sleeves?? She paused and them acknowledged my point. I then asked her, wouldn't sleeves just push the fluid down to the hands until LE developed there as well?? She then admitted that sleeves without gauntlets (hands) were kind of useless. It scares me to read how many women casually wear sleeves and yet don't mention gauntlets!!!! LE has been known to develop as late as 20 years out - probably a build up of bad maintenance on someone's part. It is expected now, that at least 30% of breast surgery patients will develop LE. Think more than once when you ask for those revisions!!!
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Ugh, those statistics on how many will develope LE sound terrible. I will be flying cross-country fairly regularly starting in about a year - I didn't know NOT to wear a sleeve if you've not been diagnosed so that is good to know.
Val - my tumor markers went up some for the first time last November (the highest they've ever been) so that combined with getting my first bone scan and then a PET scan had me nervous for months. The scans turned out fine and in February I found out my tumor markers had gone down again. I guess it was just the "moment of the draw", but I hope yours turns out the same way.
barsco - I know you must be so excited to have your son back home! I still have mine home for about 9 more months then he's graduating and starting a job in Seattle, so all the way across the country from me, too. I'm really dreading it - he's my only child and I'm divorced. I guess I better start stepping up my social life!
Something about having cancer really puts your social life in reverse for a while (at least for me), so I will have to make some actual effort to be sociable again.
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DS made it home safe n sound. What a thrill to have him here again and I think he is quite happy to be on familiar stomin grounds also. He and his girlfriend have been inseparable since his arrival.
hns - It is wonderful to see them mature but is incredibly hard to let them spread their wings sometimes. Especially when they use those wings to fly so far away from home.
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Barsco - I agree. DD is only about an hour away but could be a million miles for how often we see her. She did agree this weekend that I was not a hovering mom. Usually have no idea what she does on weekends but she will tell me the rare times she goes out of town. Did ask her to provide me with the address/cell # of her boss whom she cats sits for (at boss's house) frequently. Now that it's daylight later don't worry so much. She was looking at jobs in Seattle on the net last weekend when she was home. Hope she likes rain if she finds something. That's something that's becoming more rare in Texas. Enjoy your week with your son.
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Barbe- My PT order the gauntlets as well. Just 16 days to vacation, not like I am counting or anything. This will be my first real vacation. If I like flying then next yr I want to go to Europe.
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heart, Thank you for sharing your TM experience, that gives me hope. It has been an awful six month wait. And, having already had the upcoming Onc appointment changed from a Wed to a Friday, I was called this morning to be informed that my Onc (that I was scheduled to see this time) will only be in the office, starting this week, on Mondays & Wednesdays. So it was changed again & I will see the NP & at a different time to boot. That's okay, I much prefer her over the Onc.
barsco, I'm glad your son made it home safely. Enjoy your very special time together.
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Hi All, I've been invited to enjoy a heapin' helpin' of 6 more mos. of chemo. That's 12, count 'em 12, luscious servings every other week. I heard the first infusion day is, like, 6 hours long. After the first hour, in which I will comtemplate life, the universe, and everything--including how much I loathe all things chemo--whatever will I do with the next 5 hours? If I remember right, isn't this about when the chemo gals start chugin' the Benadryl?
Another story from the "gotta start paying myself dept.": So, after spending over an hour at the MO's today, and I was all the way up to the front desk to set my chemo start date, when I remember to ask, "Hey, what about my port? It got decomissioned about 2 mos ago, but it's going to be back in service soon...doesn't it need a flushing or something?" Turned out the answer to that was yes, it did need one. I'm pretty sure I would have gotten away without anyone giving it a thought so, once again, good thing I was supervising.
I thank God (Goddess) and all providence that I am neither old, sickly or frail and have a sound enough mind (benefit of doubt, please!) and can still look out for myself. You have no idea of how fearful I am when I can no longer do this.
Next up, getting a certain blood test that my MO said ins. would not pay for, and yet when I look online I see it is FDA-approved and see that UHC has a billing code for it. Could he be (ahem!) possibly incorrect? These are the times that try a cancer-woman's soul. Just FYI, I am including a link to the website for this particular blood test, because it does have implications for Breast Cancer as well as my good old CRC.
Blood Test for Circulating Tumor Cells
The test says for Stage IV's, which they have not labeled me as yet, BUT anyone who is facing six mos. of chemo and who might have some CTC's could be interested in what this blood test can reveal. I know I am.
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Hi everyone...thanks for the warm welcome! I lost this page somehow....getting used to navigating. I started my chemo on March 18th. Now I am feeling better but was wiped out as I was trying to work. My head feels like thumb tacs are hitting my scalp and I am itchy at the same time awaiting my hair loss. I am not too worried about that but the waiting is a drag. I put a scarf on my head so I won't scratch....getting prepared, lol.
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Elimar,
I am sorry you have another 6 mos...that stinks!You have to be your own advocate! My daughter is a cancer survivor so I learned to take control then. If I remember correctly your port needs to be flushed once a month. Its sad when health care professionals aren't doing their job! Like you said its good you are vibrant and not elderly, etc. The elderly do not always have people to stand up for them.
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Jo ~ I didn't forget to take a pic of me as Ethel, but took a pick in the Lucy/Ethel headgear and an apron and another as a down-home Carmen Miranda, so I don't think i'll post those, but promise to post one soon, just a little more dressed. But thank you, it felt really good to feel sexy and naughty for the first time in a very long time.
HUGS and so very grateful to you.
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Eli - good to hear from you. Sucks big time that you will have another 6 mos of chemo. It better damn well do it's job for you! Being your own advocate certainly keeps you busy doesn't it? Thank goodness you are on top of everything.
I have heard of the CTC test. It sounds promising for predicting and understanding cancers progression.
Hope you are healing well from surgery and have lots of sunshine to enjoy. Thinking of you often. xo
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Miss Eli, good to see you sweetie. I hope your chemos result in the most minimal side effects possible. What to do for the six hours? Have you journaled yet? A good friend of mine gave me my first journal right after my dx. I found that writing in it during my chemos made them fly by. My hub came to one tx with me and we realized that didn't work for either of us! I really preferred to go it alone. Another way I passed the time was to look around and find someone who looked like maybe they needed an ear. I wasn't always in that good mood, but when I could, it helped to get someone else to smile id I could. Hugs buddy.
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E~~ I bet one of your first thoughts as you were seeing your MO today was, "Okay, chemosabi, let's get this show on the road!" Thanks for sharing the link for the CTC test. Very interesting to read about. I wonder if my FIL has that run for his prostate cancer. He probably doesn't know really, I imagine he doesn't ask, knowing him.
It still amazes me that we have to do the job of the caregiver as well as keep track of all prior treatments, billings, payments, etc. for our healthcare or take the chance of it not getting done, or properly, at least.
I hope the time passes very quickly for you & the SE's are minor.
Think of you often.
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I know I would read, elimar, as I do at any downtime and every night. Then I'd slip into a nap using earplugs to disallow anyone from interrupting me! The plugs are bright orange and quite obvious so you're not being rude....
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Eli, thanks for the update, sucky as it is. I hear you on having to stay on top of the docs to make sure they don't screw up.
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Elimar, the Benedryl was my best friend, but I also brought a quilting project, crossword puzzle books, and magazines. I also chatted with nurses when they were available. As luck would have it, the daughter of a freind of mine had a cvouple chemos on the same day as I did, so we chatted some. I liked sleeping best though. NEver thought of the earplugs. That's a great idea, Barbe.
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After much more reading, yesterday and today, I have revised my opinion about that blood test that I linked to. Although it does look a good way to do additional monitoring for Stage IV's (the progression/remission and success of their treatment,) I really don't know how it would apply to me. All the data I see is in terms of how it applies to people with mets to organs so, if I had the test, what would it even mean to me???
I'll keep it in the back of my cluttered head and hope I will never have a need for it.
Speaking of blood tests...I will be followed with one test for a specific tumor marker (CEA, not for B/C) and I got results of being in normal range on that today. As you all know, the tumor marker tests can be good indicators but sometimes they don't accurately portray what is going on. Who knows? I'll just take it as good news anyway.
Barbe, I like your suggestion! Have earplugs, will travel. As I get into treatment more and the fatigue looms larger, I bet sleep will be a big part of treatment day and I may not just take earplugs, I make take a crazy looking sleep mask because those are a little dorky (right?) and something in me wants to be the non-conventional, attention getting patient of the chemo center anyway. hehehe
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I would read a good trashy novel.In our chemo room we all had tv hook ups so I was weird.My daughter who always accompanied me would put on the food network for us to watch the cooking shows.I think Our chemo nurse thought we were nuts.Good luck with your treatments Elle.
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In our chemo room there was one tv for about every 10 patients. I never seems to be able to suggest what was on, so I just did my own thing.
I had started online dating and one of the nurses was also on the website, so we compared the guys! That was an interesting way to pass the time.
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Eli - Taking a crazy stab here. Have you glanced through the starting chemo thread to glean any new tricks/ideas? You probably already know all the tricks but maybe not. At least the front page of the thread.
The sleep mask would be good for hiding if you are not in the mood to talk. I use earplugs all the time when we travel. Can mask most anything. Do practice putting them in esp. if using the compressible foam ones. I always have trouble getting the left one in well. Meece may be talking more fancy ones than DH and I use which are the cheap disposable. Which I found out by accident are sold at the grocery store. DH buys the bulk kind from sporting goods.
Light snacks, fav drink (non alcoholic sadly). I only like one kind of ginger ale so that would be what I would take.
I know if I had chemo I would have a Kindle etc. to read on. I'm a book reader and like the feel of book in hand but would def. buy E reader for my treat or I pad or whatever is the electronic du jour (can you tell we're not electronics junkies?).
Yes, 6 mo' months of the chemo train is sucky but want you around for a LONG TIME. Love you.
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How funny, Elimar! I like the idea of being the attention-getting patient. Why be boring - or bored? It's not exactly a fun situation anyway so amuse yourself. I think that's great news on the tumor markers! I know they can't be definitive, but if they check them regularly you can feel pretty secure about it if the numbers are consistent.
Whenever I try to take something to read at the doctor's office, I'm obviously so distracted that I have to read it all over again at home. So I quit doing that. Now, I just play word games on my iPhone. I'm waiting for my son to write my puzzle app I thought of for the iPhone. But he's kind of busy with his senior year. Terrible how things like school and work get in the way of life, dontcha know.
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Eli- glad to hear from you. This thread is quiet when you aren't here.
Sorry about having to do the chemo again. Totally sucks. Will it be the same flavor as last time or a different one? The center I went to for chemo would call early in the morning and take a lunch order for my friend and I. We could have anything we wanted from a lobster roll to a salad. Having a friend go with you makes the time go by a lot quicker. We would do a little retail therapy either on the way or on the way home. I really miss her. 
Only 14 days to go until my vacation in NC. I can't wait to rock my granddaughter.
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