August 2010...anyone starting chemo besides me?!
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Texasrose- mental note, buy duct tape or steel husbands from garage...
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went for my bloodwork today. WBC count was 8 which is good and all else was on track.
I'm scared of the port placement and the effects it could have on my chest and arteries in that area in the future. Are there long term effects of this? My nutritionist seemed to hint that there were but he didn't say much else. Frankly, it was me who didn't want to hear much else.
I'm feeling bummed today. My parents went to my aunt's house yesterday for labor day, with my grandfather. It would have been a nice chance to see everyone - we didn't get invited. They live five minutes from here. THis is the aunt who's been cooking dinner for us and stuff - so I know we weren't "forgotten" - it would have been a good opp'ty to see my dad and grandfather since their birthdays are being celebrated Friday and I probably won't be able to go cause the port goes in Thursday. At 1:00 pm my 15 yr old cousin writes and invites us, on facebook. I didn't get the message until nearly 5:00 for some reason. But it's like we were an afterthought? It just didn't make sense since they've been so attentive in other ways. So I was kind of disappointed yesterday - the kids would have loved to go. Then I have a friend who's been a good friend for many years. We've been like family, really close, or so I thought, raising our kids together. We've recently gone in separate directions just because her circumstances changed as did our (she's caring for inlaws and her parents now). She's been asking "what can I do" and frankly her plate is SO full that I haven't wanted to ask her. I told her that and she insisted that she wanted to help - practically begged me for SOMETHING to do. I told her okay - that I need stuff from the farm near her (we usually take turns going) and she said Friday that she would go today. She didn't. She must have forgotten. I haven't heard from her; she's like dropped off the planet. I wrote her about a different topic on Sunday night and never heard back. Why offer to help me if you're too busy to remember to do it?
I know I have some friends who have been totally attentive and wonderful....but is it just me or are there people you expected to just be there "more " during this time, at least emotionally for you? Like at least a pick up the phone and "how are you doing today?" And they're just not? It sucks on top of everything else. I know this is 99 percent "chemo emotion" but it's still an isolating feeling. I know the world shouldn't stop for us - but I'm so surprised at the people who HAVE come out of the woodwork and want to help and then there are those friends who are just noticably absent during this time........that sort of stings a bit.
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Calamtykel- I feel it too and haven't had chemo yet! There are good and bad surprises during this journey. My port goes in Thursday as well.
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I am feeling better and the fever didn't come back. Not real sure where the infection is/was but still on cipro. Called onc today and if I continue to be well I will get the third AC this thursday. they do a blood test first. Hard to get protein in when the window for dairy while on cipro is only 8 hours a day! I am watching reruns of "sex and the city" on TBS and of course they are on the story line where samantha gets breast cancer. Makes me cry a little but of course they don't get into anything too heavily.
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Calamtykel- I totally know what you mean so my story...
I have this sister in law, who recently married into the family (4 yrs ago) We were semi close, we didnt go get our nils done together, but she'd come over to visit us and visa versa... Anyhow, we moved away to AZ for nearly 3 yrs and when we moved back she had compleatly given us the cold shoulder. I kept texting, emailing, and calling with no answer or reply! We lived in TX 8 months before we saw her!!!! Talk about awkward. BTW her children are the closest of all the cousins to my childrens age so it makes sense that we hang out and such. Anyhow I mean i really was perplex as to why she was being like that, i would cry sometimes thinking she didnt like me.... okay so fast forward to my DX, we held a dinner to inform everyone of whats going on and lo and behold she didnt show up (she actually later admitted that she heard by voicemail and just deleated it...) Well she did end up hearing through the grapevine that i had b/c and it CHANNGEDher... i mean literally she has changed. SHe quit smoking cold turkey, she is planning a fundraiser which so far has brought in about $1,000, when i was in the hospital she spent her day off cooking us a weeks worth of meals (oh yeah btw we since moved from about 20 minutes away from them to 3 hrs away from them) we've been sleeping on an air matress and she over the weekend brought a bed, and frame and everything like sheets...
Okay so we did have a heart to heart and of course i asked why had she been ignoring us like the plauge. She said that she has had problems with a few of the in-laws, which we happen to be very close to and so she had just lumpped me into the whole group of ppl.
Okay now back to you calamty, those said in-laws we are close to have not helped much since about 2 weeks after my dx, its like okay i am done with all my tests so thats it! Its ike the tides have changed, these in-laws actually are sabotaging my fundraiser! One actually called a few people and said "Timothea doesnt need all that much financially because she is applyingfor a co-pay assistance program" WTH! that is a maybe at best and only covers the chemo! What about everything else?!?!?! That same person called me (i had mistakenly left my mamogram results on my non affected breast at her house) in a very accusotory tone and said that she sees the results that the mamogram came back clear! And that i didnt have cancer!!!! Oh no i really enjoy all these SE and am faking it for your sake!!! This is just the tip of the iceburg really! So i know how it feels for the regularly the go to ppl fade away and the unlikely helpers come out of the wood work! it is a blessing really
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Hi All. I had second round of chemo today. Wow the room was full of people today. It really makes you think about that there are so many of us fighting the good fight. Most were men today and one was really sick. Cancer just sucks so. During my infusion the bag began to leak where the tubing began. The nurse gloved up, and took bag to back room then returned with cloth to clean up spillage making sure nothing got on me or man next to me with great, great concern. And I am sitting there thinking and that's the stuff you're putting in me!!
This was second round of TCH. I have 4 more. They are giving me more steroids but are tappering me off rather than just quitting Day 2. I will take through Day 5 post infusion, taking the two twice a day Day 1 and 2, then Day 3 and 4 only 1 twice a day, then Day 5 half twice a day. Last time I crashed so badly. I did not sleep and physically laid and thought at one point "this is what people feel like when they are dying". I could not raise my head. Afterwards I realized what had happened, but during it, I was just lost. I so hope it goes better this time.
. And a friend of mine who is a survivor 10 years out just advised me to drink lots of water with lemon, which I knew, but she also said to eat celery. Has anyone else heard this? Don't have any on hand just now, but have become a great believer in ginger...
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Zenith: taking Cipro is a pain in the ass! I could not believe...2 hours before or 6 hours after I take Iron and other vitamins etc... You really do end up with 8 hours a day in which to squeeze in mostly everything. I am very happy your fever came down. I was worried about you. Glad to hear your are doing better.
Adey: 55th?! I took that from "Parks and Rec!" I hope it will be the 16th. The *final* CT scan is Thursday. The beginning of next week is chemo teaching and then fill the prescriptions and off I go! We are starting at the same time!!! YEAH!!! Frankenhusband! Good to hear from you today.
Calamtykel: another one examining every strand! Your DH will undoubtedly be pulling his own out soon! On the friends, my hairdresser of 14 years came over when she found out I had bc and gave me a big story about how she would go shopping and other associated word vomit. Mind you, this was not a request but her telling me all that she would do. We left off with me giving her my front door key and I told her forget everything else and just check on my cat while I am in the hospital, if need be, as I did not know how long I might be. Not only did I never hear from her again, I went to Lowe's several times trying to get my front door key copied so I could give others the key just in case and I could NOT get an appropriate copy made. I ended up giving out the back door key and had to leave the sensor lights on in the back so not only did all the animals run up my electric bill but I am sure my backyard looked like a disco for 2 nights! The back door is a little tricky also.
In any case, finally she mails the key back to me and ACCUSES me of not keeping in touch with her. Please, anybody, do you all contact your friends to give them bc updates!?!?!? When one is sick, especially with something like bc, under the aegis of social etiquette, PEOPLE SHOULD BE CALLING YOU!!! I never expect much from anyone to begin with but after texting her 3 times about sending that key back, and she finally mails it, I just put her on the ahole list! After 14 years with her she did not even send a get well card! Very classy!
You really find people out at a time like this. Unfortunately it is not always good news. People act weird about cancer also. It freaks them out (us too!)! Your friend, in all fairness, sounds pretty spread thin with taking care of the family and extended family. I think, even though it has been a let-down, she means well but just does not have the time. I have a friend like her who is always making offers of assistance/promises she can't keep. I say let it go. We all feel let down by one person or another in our lives but, sadly, it is the nature of the struggle we are in.
Texas: talk about finding people out?! Gadzooks!!!!! First sabotaging your fundraiser?! Then declaring you well, cleared of bc and perusing your mammo stating you are ok like you made this story up?! WTH is right and, in fact, I would prefer to buy a different consonant!! The story is just horrible. However, the story of the woman who gave up smoking was great! My friend moved to TN in May and I have sort of inherited a mutual friend and he has been really helpful through this. He also quit smoking! I don't even know how people do it anymore- cigs are $10 a pack in CT and if you smoke 2 a day that is $1000 a month!!! I'd be smoke-free at Neiman Marcus!
Lessons learned.....I had to fire my landscaper under the auspices of cutbacks and today I developed a healthy respect for what they do!!!! I am tired!
Your FEARLESS Leader!
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Deb,looks like we have similar diagnoses 'cept you are ductal and I'm lobular. It is interesting how all of our treatments differ. Poison? yes, just kill the bad guys. Libray lil0
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Protein - I met with the oncology nutritionist today and she suggested I eat about 95 grams of protein a day, which comes to about 0.57 grams of protein per pound of body weight per day (I weigh 165). I will have to add some extra protein for lunch and snacks. Didn't know if anyone else had heard this.0
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Lizzy- The GALL!!! When we had this informative dinner to let ppl know about my b/c we specifically said "we are going to be very busy and caught up with whats going on that we honestly wont be able to remember to call everyone every step of the way. If you feel like we havent called in a while please call and check in." this way they knew we were'nt gonna send out hourly updates! And for hte most part ppl are calling and texting to see what going on!
Yup you really find out who your friends are! LOL is there an F vanna!
Cut backs suck, theres stuff we've gone without too, makes you appreciate what you have thats for sure!!!!
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Texas: the reason I really fired that joker landscaper is because one morning I was sleeping in (my favorite!) and awoke to the sounds of the mower at 8:30 and my lawn was brown and gross. He was mowing NOTHING. I did not say anything but decided then and there he was out. There was a time in July in CT where most everyone's lawn took on a brown hue and, as mine was dead, I was aggravated he was charging me to make noise! Then came the pseudo boyfriend who purposely kept the blades high on his mower and kept it high so he could come over a lot because it would need to be mowed a lot! He also broke my marginally useful mower which did not set well with me! Hello Sears! I just bought a new mower, most here know that great story, and when I looked at my work today, I am confident I do a better job than any of them! My lawn looks manicured for the first time this season = GOODBYE BOYS! Jokers!
That is my landscaping tale!
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Omaz: protein is the catalyst for WBC development and for muscles. Eat cheese sticks, bet Boost w/protein or a protein powder mix (GNC) and peanuts. Egg white omelettes with cheese (and I like tobasco as well!) with some chopped vegetables is a nutritional and protein-packed powerhouse. The more protein you get at a time like this, the better.0
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must be on those 10 pages i havent caught up reading yet
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I've been eating almonds and walnuts too to add protien, and Boost shakes
My husband readsomewhere that walnuts did something good for cancer lol so that was added to our grocery list0 -
Ah Texas....Walnuts for protein, good! Now I think I will have to run out and get an vanilla hot fudge sundae, with walnuts of course, in the interest of fighting my cancer!!! Yeah!!
Lizzy, I am glad you finally are honing in on a treatment date. I really do think you have much less anxiety once you get through that first treatment. Hang in there, the waiting is almost over!
And to Somany, Zenith, and Drbeall I wish you problem free infusions with minimal side effects this week. Good luck!
Sweeney-you really are so funny, I love the hair obsession. Isn't it funny, who would have thought a year ago we would be obesessing over strands of hair, bowel movements, and all these various drugs they have us on! I can't even remember the last time I took an aspirin before BC!
Debbi
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Omaz, thanks for the tips on lunch sacks etc,. Yes, I am going to do something similar when I start the taxol. Right now I am in the hospital. I caught that cold and saw the Onc this morning and my wbc was almost nothing so he admitted me and I am on IV antibiotics for a couple of days. Scarey since I have been careful about germs and not going out very much. Take care, everyone. Coleen
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57Coleen - I hope you feel better soon!!0
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DebJ: that story about the chemo spilling is downright scary!!!!! All you had to do was add hazmat suit and I would have cancelled my chemo all together!
57Colleen: I am so sorry to hear you are in the hospital but it is amazing how IV for a few days can save our lives. I hope you are feeling better and are back home soon.
SPTMM: I can't agree with you more about what we were thinking about last year and here is cancer and all it's thought-monopolizing affects today! Great...just great!
Good night all-
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thanks ladies. You were right on - she's just spread really thin. We're back to being cool again. Like I said, I know it was 99 percent chemo-emotion!
Texas - I'm glad you're back on good terms. Sometimes cancer does have some blessings with it, doesn't it? My childhood bff has been in and out of touch with me over the years. Now she's wonderful - she makes me laugh --came with me for my "haircut", etc. I'm so blessed by the people who have come alongside me and all the different ways they fit into the puzzle - one who shaved her head, one who had brain mets 10 years ago (she's fine now) and cooked us a wonderful dinner with a special cake- just the little extras.
And my parents who have been helping with our bills for the nutritionist and taking care of the kids whenever needed. I think if nothing else, all this has made me sensitive to the needs of other people who get sick. Even just the little cards and notes that arrive in the mail are such a "lift" sometimes!
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Coleen, hope its nothing and you get out soon! Oh a tip, watch what the hospital tries to give ya. I am not supposed to take anything that thins my blood (ie asprin or anything) and they came in one day with 2 iv bags and said one was my antibiotic and the other was a blood thinner... I informed them on my onco's instructions so they didnt hook it up and went to talk to the on call dr.... Whew problem averted, but remember YOU ALONE ARE YOUR BEST ADVOCATE
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Hi all,
Mouth sores are a little better, thanks for the advice.
sweeney love the hair chronicles, so true! this week eyelashes are thinning so I'm bummed.
texas and calamtykel I'm glad your getting some good support, sorry about the rotten apples.
I'm feeling a little down; people haven't really been reaching out to us much. One of the neighbors told me the other day how much she admired my attitude and how I was handling it ( told her I have my weepy moments indoors) but said you won't let anyone help. I was a little floored b/c we haven't turned down any offers , just haven't gotten any since back in June after surgery. I'm trying to let it go, analyzing it is just giving me stress.
57colleen so sorry you're in the hospital. Hope you get some peaceful rest and are back at home soon.
Carolyn
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It's been interesting to me the people who have been there for me, and those who just talked a good game. I have not been good at predicting who would fall in each group. If you can look at it from a sort of disinterested point of view, it's pretty interesting.
I have a CaringBridge site so that I could keep everybody up to date without having to stay on the phone all the time and go over everything a million times (I hate the phone). It amazes me the people who call me and say "I haven't checked your site" and want me to go through the whole thing all over again. Sigh ...
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Have to agree with you there Ladyinbama. I haven't actually needed any help per say, which is good, since I have no clue who would have shown up. But I have been completely surprised by who calls, who emails, who sends cards, who sends flowers, who came to visit and made sure I didn't need anything.......and....who calls my kids to make sure they are ok, don't need anything, etc. Idk if some people just get scared, or if they think you are close enough that if you want them you will let them know. Maybe it seems to mean more from people you are not as close to, because you don't expect anything from them.
I think I am pretty good about sending a card or calling someone for illnesses etc, but at my last chemo an aquaintance of mine showed up to just hang out and chat. I never would have thought of doing that. That was amazing. I also had a couple people show up at the hospital to sit with my husband when I was in surgery. Again--aquaintences. They didn't even know him, they had to find him by caling my phone, which he had.
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cptry- Yeah thats starnge that she assumed you weren't letting anyone help... Maybe you could have said something like "you know i really could use this or that..." maybe she would have reaslied you do want help
Its hard to ask for it, but sometimes help is needed and people just dont know HOW to offer. Cheer up LadyinBama- That same sister in law that is doing everything also set up a facebook site for me where she gets on and updates nearly daily so most my freidns and family get on there and check. It sorta wears you ut ot have to repeat the same story over and over! Sometimes i catch myself saying did i tell you this part or that, because i honestly dont remember!
Lisaattheshore- i think you're right it means more coming from ppl that you really dont expect anything from. So nice for your friends to show up at the hospital and be with your husband.
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57colleen I hope you are doing better and get out of the hospital soon!
Good luck to everyone getting treatments this week!
Regarding friends/family and support, as others have said it is interesting to see who steps up and who does not. I guess one good thing about this is that it has helped renew friendships with people I have lost touch with. Like LadyinBama I have a CaringBridge website and I have found that really helpful for keeping in touch with people. I am also not a big phone person so it has been a good way for me to share what is going on without having repeated phone calls. For those of you not using CaringBridge, you may want to check it out. It is a free website that you use like a blog, you can post updates and photos and people can write in the "guestbook". I have found that I really enjoy posting on it and reading the comments that people leave for me.
In other free stuff news, I got my head wrap from Gaila yesterday! I was so impressed, I submitted the request last Wednesday and the wrap arrived yesterday, even with the holiday weekend. Here is the link if anyone is interested: http://www.gailafund.org/site/hats_gaila_for_patients.php I got a cotton one and the material is very silky smooth. You can see on the website, they don't lay flat on the head but sort of puff up a little. I still have to figure out how to tie it properly (they have a video on the website) but I think it will be cute. They also sent a nice little handwritten note with it that made me feel good. I encourage all of you to check them out!
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I have a caringbridge site too, and I totally agree about what a nice service it is. The comments that people leave there are really lovely and uplifting and I go there often to re-read them. They kind of dwindled after the first 3 weeks or so of my diagnosis, but I still get some when i post a new entry. And it gives you a running count of how many times people have looked at your site, and mine is well over 2,000! :-)
A friend also sent me to a site for Cleaning for a Reason, which has the potential to be awesome! They come in and clean your house once a month for 4 months while you are undergoing treatment for cancer. They are processing my application, and I'm waiting to hear if they have someone in my area who can do it, but WHAT A GREAT IDEA!!!!! http://www.cleaningforareason.org/
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Having a TOTAL panic attack about the port placement tomorrow. Hospital just called - they have me down for GENERAL anethesia! WTH!?? I told her I was told it was a local with sedation - that I DO NOT want general and she said I'd have to talk with the anesthesiologist, but that's what they have me down for.
I'm furious and also really really scared. General makes me VERY sick and VERY dizzy and very constipated! UGH! I hope and pray they are willing to make some changes come tomorrow morning!
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Calamtykel: I don't know what they call the anesthetic I got, but it's like what you get with a colonoscopy. You aren't as deep under as general anesth., but you are "out of it." That's probably what they'll do, or at least you can request it. They can't put you under general without your consent, so take a deep breath. It will be ok. My port placement was easy. Praying for you, it will be fine.
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GOOD DAY CHEMO-SABIS!!!!! This board reminds me of Wall St in the week before Labor Day...very quiet!
Calamtykel- they say general but you turn out to be hazy. I was awake for the entire thing and was able to stand up and get off of the operating table back onto the gurney. It was ridiculous that I could not drive myself to and from. You will be ok. Don't be nervous. The people making the phone calls are simiply reading from a sheet of instructions. It is such an easy procedure. You will know it is there for the first few days and then you will totally forget about it.
JSW: that is a cool site! I ordered my hat just now! Thanks. When I look down the road realizing I am going to be doing this until January, I am happy to receive some warm head coverings for such a nice price!
Lisasinglem: that is a great site as well. Thanks for the post. I will definitely be checking more into that! How is the show going? How are you feeling while working? Do you feel it is zapping your energy to work on chemo or are you just feeling a general tiredness that is not affected by working? Just wondering as I start chemo next week and plan to be getting back to work before the end of September. I am going nuts sitting around and really need to get back to doing something. A lot of people work through chemo, which I did not realize until I did some research on it, so why should I be any different?! Plus I want to get back to my life as it were!
Ladyinbama: I agree about people who talked a good game. I don't really like pity parties or people lurking about, trying to see if they can be of assistance. In fact, that drives me crazy! I have been surprised about people that arrived to help and who have been really good about things. I hate to admit that *I* have felt uncomfortable going to see people who are sick/are struggling because a lot of times people are not like me and get dreadfully depressed over a bout with their health and, to be quite frank, it can be a real downer. I volunteered with the elderly for years and would spend time etc.. but, in the end, I burned out. A lot of them were very miserable about their health and their kids not coming around and I just got really tired of it. I sometimes think people are weird about things like what we are going through because they don't want to feel down. I could be wrong but it might motivate some people to practice avoidance at a time like this. The bottom line, however, is you do find out who your friends are and I was surprised this many people like me!!!!!!!
I hope everyone is having a nice day. Great weather in the northeast this week...unbelievable in fact!
I also wish well to Gingerbrew, Zenith, drbeall, somanyblessings and spttm embarking on additional txs this week...BEST OF LUCK, GIRLS!
Your FEARLESS Leader!
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thanks guys. I'm just having a really low day today. I feel so very "done" with all of this crap. Seriously. I know - people tell me I'm doing "well" but I feel like every chemo is one more assault on my body and it's beginning to weaken and that just sucks to watch. Now I'm supposed to endure this ridiculous port surgery tomorrow which will be just one more blow. My nutritionist doesn't want me "running" right now --just walking (brisk okay) but not pushing it because of the heart flutters (which are probably chemo related - heck I get them when I eat dark chocolate....) and probably stress related at this point. Just feel like I'm losing more and more control over stuff and it sucks. Now I'm supposed to "recover" from another surgery -this port thing AND have chemo on Monday and recover from THAT! DH reminds me after this one, just one more of the AC and then I'm done with that. But it's just so hard to see past today for some reason.....
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