August 2010...anyone starting chemo besides me?!
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Hi Lizzie, my dad died 7 years ago this last weekend. I was with him when he died. He was at home in his bed. He had end stage diabetes and couldn't do dialysis anymore. I miss my dad. He taught me how to read maps, identify airplanes in the sky, drive, play catch, tell jokes and watch sports. He loved to go for Sunday drives and he always read the paper when he got home from work. He spoke his mind and I loved him. He was a good guy.0
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Hi, Omaz-
My dad was the same with the Sunday drives! I think we went to every state park in Connecticut and some in Mass! He read the paper every night also, when he got home from work. My dad was a really good guy, also. I loved him. He taught me a lot of different things about business and one of the most important things he tried to teach me was patience! I was just reminiscing with a friend who lives in Massachusetts that he would come and pick her and I up at rollerskating at nearly 1AM on Friday night/Saturday morning! I was also remembering those Jordache, CK and Sassoon jeans I just had to have! They were $50 a pair back then! He also used to give me his credit card and let me go get clothes for school etc... Well, my gym locker kept getting broken into and, not joking, I must have gone through 10 pair of Reebok classics that year! He used to take me to concerts also. There was a theater in CT not far from our house and the first concert I ever saw with him was "Sha Na Na (sp?)" and that Bowzer guy! It was fun. He and his wife used to take me to all kinds of shows with them at that theater. We saw Kenny Rogers, Barbara Mandrell (sp?), Kenny Loggins...I don't know...can't remember but there was a bunch of stuff! In fact, one of my busy projects these days is going through tons of pics, categorizing them into 5 year blocks and then ziplocing each and placing them in small totes. Each small tote represents 5 years and so on. I found a pic of he and I the other day and he was holding me and I was screaming because my Godfather used to scare the daylights out of me as he had a beard! I have a lot of good memories with my father. He was really good to my bf when I was in elementary and middle school who came from a single parent home. He was like her dad also. He was a good man and I miss him forever. I think he was such a great example of what a dad should be that any of these jokers I met in my life would never measure up!
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Had my breast onco checkup today and all looks good! I would be lying if I wasn't nervous. Have my gyn onco appt in March then home free for 6 months. I asked my onco today about his thoughts on recurrence. He said that he would not consider me --or any bc patient--NED and he said that he does not consider 5 years to be that magical checkpoint anymore....he said that recurrence can happen at any time up to 10 years. After 10 years, becomes more rare. He is say it like it is... As much as I would like to hear him say something else...I will take the "you're good".
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Good news rachel! I get nervous too. Going again at the end of this month for 3 month checkup. I also scheduled a physical with my regular doc. Haven't had one of those for a while!0
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good news Rachel! In my head I'm saying five years because I can only hold my breath so long:-) Statistics don't really matter unless you beat them so we just have to go on as if we are going to.
Carolyn
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Rachel - I'm confused about your oncologlist. NED would be "no evidence of disease". How can he NOT consider that term for you if you have "no evidence of disease"? Unless he sees evidence, then I think he has to consider you NED. I understand what he's saying, but he needs to phrase it a little differently - maybe "I can't consider you cancer free" or something - which we all know unfortunately.
I hate those oncologlist visits. Sometimes I think of requesting scans just because I can't stand it anymore. Like right now - my foot is still bugging me on the side; even though it's better than it was -but it gets me thinking if because it's not better is it something worse than a weak or inflammed tendon? Good grief - we could drive ourselves nuts!!
I went out on the bike today for an hour. I feel like absolute RUBBER right now!! I stopped every 10 minutes or so and did other exercises- did my situps in the driveway, etc . I didn't go out on the street - just rode it around the property which is about 3 1/2 acres - and not all flat - up and down hills, around and around in the field, etc. WOW am I feeling this! Maybe this is best for me right now - I'm working all new muscles that I never knew I had before with running!
I also fell asleep in the sun on the bed since the sun comes in the window there in the afternoon. I had my chest exposed to get in as much skin as possible --I read that if you can expose 20% of your body to sunlight just 10 minutes a day it reduces your chances of cancer (different kinds but including breast) by 60% WOW! All I know is that it makes me feel better in the winter!
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Cal---he mentioned that everything looked good then I asked him about recurrence--that's when he went into explaining that this "5 year" thing that everyone reaches for isn't really something he would consider...he said that he has seen recurrence within 10 years...although every year...your chance of recurrence lessens. I guess he is being honest to say that cancer isn't "cured"...I guess we all want to hear those words but no that it isn't possible for Docs to say that...or at least my Doc.
Have one more Onco appt to get through in early March for my cervical cancer and then another checkup in August.
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My onc doesn't talk about it much when I see him. He is mostly in the present. He has been taking care of cancer patients for a long time, I think he's seen it all.
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Rachel - that's true; breast cancer is a different beast than most cancers. Five years is a mark for most cancers at which time it's rare for them to come back, but since BC is SO slow growing, it can come back years later which really stinks!
Actually triple negative BC has a lower recurrence rate 5 years later(higher distant recurrence within 5 years) than hormone positive cancer, so the five year mark for triple neg is more true for them than us.
I went through this with my onc too - I asked her why you hear of women 15 years later whose BC comes back somewhere else and she said its' the "stem" cells that cause it. I didn't quite get what she said.
However, there are many studies to show that lifestyle changes such as diet and exercise do reduce the risk of even distant recurrences and that is important in that it shows that our bodies can sometimes do something ABOUT mets ...somehow, they just don't seem to be sure how. Sometimes it's unavoidable, but those studies are fascinating I think.
I think we all have to learn how to put cancer in it's place. I hate worrying about every ache and pain --an achy knee, a painful foot - and I have to constantly remind myself "Okay - people have aches and pains every day and they are NOT cancer related at all..." etc. Not to say we don't have to be vigilant, but we do have to put it in its place and not rush to the doctor with every bruise.
The bill I'm fighting the hospital over is a $318 x ray that the onc ordered when I complained that my shoulder hurt. SHEESH like people don't injure their shoulders!? It was stupid of me to rush in there - I had to see a sub oncologlist. I actually went in because I was afraid of lymphedema (this was last year) because my arm and shoulder felt heavy. It was just a sore muscle, but he rushes me into a big series x-rays on the spot! That was dumb - he should have told me to go home and wait two weeks instead of rushing me into a rib series of x rays. Lesson learned! And it was an expensive one at that!
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Lizzie, How are you doing? How is everyone else doing?0
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Lizzy is okay. I'm sure she'll be back at some point!
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Thanks Adey! How are you doing? I am coming up on a year since the end of rads.0
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Omaz- I'm good and me too for rads, one year the end of March! And one year from chemo was 1/8. Hard to believe. I had butt boobs (hip flaps) done Dec 6th and will be going back to NOLA on Mar 15th for stage two. Can't wait. I'm coming to the end. Except for the Tamox/AI and follow up and thickening due to Tamox... well maybe not! (c: How are you doing? Great I hope. Warm thoughts to all.
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Ginger: I've been sick too. Since the end of my second chemo, my immune system hasn't bounced back like it did last time. Your ER visit sounds scary, hope you're ok now.
I just had to share this link. I like this woman's attitude!
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Hi all! I just stopped by to catch up a little on the thread and to report on surgery. Surgery went well, recovery is going alright, I still have one stinking drain (for four weeks now) that I would love to get rid of. Fairly happy with my new girls and I can honestly say that I did not realize how much I was missing having that breast until I was looking down in the shower the other morning and it looked like my old breasts. I cried. I am happy to be on this side of the surgery and I truely believe in my mind, the other breast was cancerous (not literally). The pathology report on all the tissue was clean and they even did the scar tissue from the original mastectomy. Hope everyone is hanging in there and working to find our new normals...whatever that might be.
Hugs to all,
Michelle
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Michelle - Glad to hear that your surgery went well!0
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Great video Lady!0
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I thought today was Saturday
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Glad surgery went well Michelle. Hang in there on the drain. Not to discourage you, but my last one hung on for 6 damn weeks! Talk about relieved when that sucker came out. Hugs.
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Hi Everyone! Just wanted to stop by and check in. Everything is going well for me here.
Mommi and Adey: Glad to hear your surgeries went well. Good luck on getting that drain out soon Mommi.
Lady: I love that clip! Thanks for the link. How are you doing? Are you adjusting to your new situation?
Ginger: How disappointing to find out it was Friday, huh! How are you doing without your volunteer work? Have you found something else to fill your time?
Omaz: How is the driving going? Life with teenagers, full of thrilling adventures, huh? LOL.
Lizzie: Hey woman...how's it going?
I hope everyone is doing well. Getting ready for some snow here tomo, just a couple inches. I am sooo glad this is only the second snow we have had this winter. We have been very spoiled.
Debbi
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Good evening warriors!
I am so sorry I have been rather absent but scans, tests and recon surgeries occupy my thoughts and days. I have had an extended period of time to nurture and grow our thread, alas my life must get back to full-swing and hopefully it will in the next 2-3 months! I will always stop by and you are all always in my thoughts.
Omaz: thanks for asking about me! I always think of everyone here. How are you feeling these days? Is your dd enjoying her little Civic?! Oh, the joys of that first car and all that independence! I loved it. Some of my fondest memories.
Texas: we need an update!!!!!! Where have you been? What are you up to? How are you feeling? We miss you
Ginger: how are you? You did not come back to let us know what happened after that scary hospital ER visit. Please stop by and post to let us know how you are and what, praying nothing, came of the tests and follow-ups regarding what happened. I can still remember how scary that ride to the ER must have been for you. What a scary experience.
OMG..speaking of scary, the woman in Norwalk, CT who was "accused" of stealing education took a plea deal. She plead "guilty" to the charge so she could spend less than 5 years in jail? I was appalled. I cannot believe that because she wanted her child to be educated in a better, and probably safer, school than he would have been in Bridgeport that she is going to jail. There is something so wrong. Bridgeport was on the news again these past few days because, and I kid you not, a landlord put 3 handicapped people out of their home on eviction. One is in a wheelchair, one can barely move, the other has cancer and they all seem to be perhaps a bit learning disabled. They called the local news to report what had happened. They actually threw their belongings on the lawn. While the news was there the phony ass landlord came rolling up and claimed to be so upset and was crying...WTF is wrong with people? I was a landlord to a house in a very socioeconomically depressed area and I had gang members in that house. I could care less that they were in a gang but they were also, and regularly, months behind on rent. I would have NEVER put them out. They would suddenly show up with a number of months of rent and then I would not hear again for a while. All I can say is although not everyone is me, where is the altruism? It is the dead of winter. People are sick...so greedy and always letting money drive the bus. A close friend's aunt owns about 30 properties in Bridgeport and she has been a landlord there for over 30 years. She has never once evicted a person. It takes all kinds.Ladyinbama: How are you doing? You seem like your spirits are good. I hope you continue to feel well and find some things that you enjoy doing these days. At least you still have some decent weather in the South!
Calamtykel: it is so funny that you mention BC is so slow-growing as I was mentioning to one of my doctors about my fears bc was back and one of them said something like "oh no, not that soon" or not that big so soon or whatever. Of course, I had no clue bc was a slow-grower. This disease is tiring to keep track of all the details and minutiae involved.
How are you doing around this time of your father's passing? I am thinking of you.I thought of you the other day also as someone was espousing about how bad Obamacare and socialized medicine will be for this country and I said "you know what? Through (bco) I encountered women from Scotland, the UK, Ireland, Italy, Canada etc... and do you know who had the most complaints, the worst treatment, the asshole doctors and the bills getting turned over to collections? YEAH, the good old girls in the USA so stop talking about what you know nothing about." He just stared at me. People have no clue that Rachel and Sweeney have had an entirely seemingly unencumbered time of getting the same exact treatment we all have only we spend a lot more money and get attitudes from money-grubbing doctors who are only in it for the money. A Republican friend (creep!) likes to talk out of his ass (a favorite of the entire party!) about how all these doctors are going to leave this country and I said "oh yeah, and where the hell are they going?! They can't make this money anywhere else on this planet!" Of course, he did not have much to say after that. People in this country are drunk on the propaganda of how bad socialized med is and how we will all have to wait in lines to get crap done. It would be better than being demolished financially and always wondering if what they are doing is because it is necessary or because they are going to make a lot of money off of it. I am done!!!
Mommichelle: I am so glad surgery went well and you are recovering! Good news. I am very happy for you.
Adey: thanks for letting the girls know I am alive! I appreciate your assistance and am so glad your butt boobs are good! Have a good weekend, woman!
WHAT CANCER IS AND WHAT IT IS NOT! That was an amazing video! I am so glad she made it. I am going to make a place for it in our intro so that long after I am gone, women who stop by to see what us bc girls were going through back in August 2010, about to start chemo, they will happen upon the link connecting them to a visual aid of how politics, money and greed attempted to impugn this disease and the dreadful experience it becomes for every woman afflicted. A close friend always says "this world is gone" and I am starting to understand what he means.
I think Sptmm and I are the only ones to be affected by this weekend's small snowstorm and I am very grateful, as is Deb, that we have not seen more of it!
Happy trails all and I hope you have a good weekend-
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Good to hear from you Lizzie. DD is still a weekend practice driver even though she is 16 now. I am hopeful that by the summer she will be confident enough to get her license. I have been having a racing heart beat and interspersed with skips. It's been going on since Christmas and was getting worse so I called my onc and was told to contact my PCP. I started paying attention and noticed that it seems to come on after I eat bread. No kidding. After I had a bagel at work one day - it happened. The next day after snack, then toast....it occurred to me that I might have developed a sensitivity to wheat, maybe because of the chemo messing with my gut lining. So I cut out bread/pasta for a couple days and it's nearly gone. I am continuing on with the no bread/pasta test and so far so good. Anyone heard of getting a sensitivity to wheat as an adult?0
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Hi everybody.
I have not seen my PCP since I was at the ER last week. I have an appointment for thursday afternoon. I feel pretty good now. I am still afraid of the pain I had so nothing acidy or spicy has passed my lips. Breakfast cereal, baked potatoes, rice, toast, scrambled eggs, quinoa. Just call it the white diett trimmed out with bits of broccolli. Iam back on prevacid and think my three weeks off of it, sort of by accident, caused the entire event. I do have a haitius hernia and have taken acid blocking meds for years. Iguess they worked!
Lizzy have you considered running for office? Or wriiting an activist blog? You rant good lady. I am serious because I am so sick of this misinformation being disseminated.The spin put on anything and everything, all to get or regain power, that is not in the interest of the people! Grrr.
Have we heard from Texas lately? I hope she is off having fun with her kids.
My DGD learned to say Grandma this week, clearly. She is really proud of herself. So am I.
Omaz I remember when my kids learned to drive. We wouldnt let the boys get their licenses in high school and I remain glad for that. Our Dd commuted to the city for HS and then went to NYU her freshman year of college so she still didnt need a car. She had her license but never drove until she moved to LA the year after she graduated from college.
Sportmom it is now SATURDAY! I was so embarassed to admit to my husband that my plans for the day were actually for the next day.
Ginger
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Good day, my lovely warriors!
Omaz: One night my friend and I left NYC around 1AM. We were heading back to his house in New Rochelle when he decided to get off I95 in the Bronx so he could get something at a convenience store! I was a little too tipsy to complain but sure enough, when we were en route this dubiously located convenience store, a "person" landed in the street about 100 feet in front of our car. They had jumped out the window of a blighted building. As the story unfolded, apparently this person was an IV drug user that apparently upset a dealer and they gave this person battery acid instead of their drug or something to that effect. I guess the pain caused that person to take their life. More to this point, I honestly feel like chemo is a controlled battery acid and it really resets our system entirely sans the pain. It is like a clean start and I think whatever aversions you now have, it is really because you have a new system, albeit achieved by dubious means! Anything is possible now and don't forget, cancer loves sugar and, as you know, bread, potatoes, pasta, cereal etc... all sugar in our bodies. I seriously think the government serving up boat loads of sugar post-WWII so as to feed a growing population was tantamount to the proliferation of cancer. In long, eat the poison animals, that is better for us! Seriously, I just think cancer means very little carb consumption. I even went back to an old dessert that I would have when limiting carbs which is ricotta based.
It is so funny that your dd is not prepared to drive right away. We were hell-bent on getting that driver's license at 16 (my brothers and sister) and could not wait to get out on the road. The antithesis of this, however, is my best friend's son who, at almost 17, still does not want to get his license. He has a few friends that don't want their license either. At 17, my boyfriend Ed and his friend John, who just came into his trust fund, and I went to Manhattan in a John's mother's new car, with a cooler and a plan to have some fun!! We had a blast the whole trip! I called my father from a pay phone in NYC and told him I was staying at a friend's house! Of course he probably did not believe me! That was just one of my trips. There was me heading to RI at 17, getting a speeding ticket for doing 95 on 95, summarily tossing that in the trunk, thereby forcing my father to start howling 3 months later when he got the letter from the state!!! It is just anomalous to me that there seems to be a new trend amongst kids and not wanting to get licensed right away. It is probably good anyway! I am also sure, however, there are things your dd would do in a snap, like behave, that was very foreign to me!
Ginger: my grandfather ran for Mayor and even my sister recently told me I should go into politics! It is just such a behemoth, messy system.... I would join forces w/Gov Chris Christie in NJ because we have very much the same attitude!! I can go through someone like a knife through butter and it is this very candid nature that probably would negate the "ass kissing" requirement of so many politicians! Christie is the only one I have ever seen who I would even remotely consider running with and I am an Independent (like I had to tell you that!). When my sister told me I should go into politics I was like you know I am a serious Ahole but she responded with something to the effect of that is what we need, for more people to just set it straight.
I am so glad you are feeling better. Good for you. I am so freakin' tired of gross meat but I don't know what else to do. Speaking of such matters, I went to Target yesterday and compared their Whey protein powder with EAS and Pure Protein and one other=they are all the same! Speaking of which, I have to go make one now. BTW, soy is less than 2% in all of these powders which my nutritionist in Survivorship Clinic said was fine. She also encouraged me to not vilify soy in such a way but I feel like I don't have a choice. It is estrogen's bff and how can I trust it now? I think we should make a broadway-caliber show on the underpinnings of cancer like let people know about cancer through an entertainment factor. It is the only way!
Liver pain and NAFLD: As you all know, I have been having an eclectic mix of pains in my liver region. This could be caused by NAFLD (non-alcoholic fatty liver disease) and guess what causes NAFLD? Yes, our friend Tamoxifen. I am so pissed. WTF with these doctors? Do I have to find out everything on the freakin' internet? The internet is like my new cancer doctor! I have been complaining of pains in my liver for 7 months now. How did anyone with cancer, or any other disease, manage before the internet is my question?
Tex is ok. She is away right now. I am sure she will post when she gets back and has some time.
I hope you all are having a nice day. Take care of yourselves or call your doctor, the internet, for help!!!!!!
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Lizzie - I know - I got my license as soon as I could! Today DD and I went out driving and she did great. It's starting to be more familiar and we just do a little at a time. She is so proud of herself afterwards! I agree with you on the protein. Protein and vegetables and fruit.I have a annual checkup with my PCP on Wednesday and will interested to see what my cholesterol is now that I've gone through chemopause. It always runs a little high but I am hopeful that it won't be too bad.Still avoiding the bread/pasta and so far so good. Lizzie - you have had a an adventurous life! I agree with Ginger that you would be a great advocate for whatever cause you choose. Are you still thinking of law school?0
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Omaz: that is great that you went out driving with her! She will get more confident soon enough! With a wonderful mom like you, how could she not?!
My life was exciting before I started chasing my tail in the medical industrial complex! As of late, I have really been California dreaming! I am seriously thinking of Santa Monica. I am tired of the weather and as much as I love the pace of the Northeast, I might like to surf and not be monopolized with thoughts of weather and bs! Plus my Asian language skills are more useful the closer to the PacRim I can get. I have a business that I had to put on hold while cancer has been visiting but, and ideally, I get that going again and head West. I think I might be ready for a change. Otherwise I will most likely move to the Jersey Shore and morph into a sycophant, lurking around Gov Christie, and perhaps on his campaign for President!!
As for law school, and I know this sounds odd, I have decided on an "online" law school which is in California and allows me to bar in CA. I could complete the coursework from anywhere or go to CA and continue on that route to barring there. I am not sure yet. If I can get through this next 10 hour surgery alive and come out with some boobs and a little symmetry, I can finally move on . Also I just had a PET and am waiting on the results of that. I am ready to put this all behind me but that liver pain scares me.
I am so glad you are having a nice day with your dd! Good for you.
Ginger: that is great that your dgd said "Grandma!" What a great moment for you!
Texas said she will post later today.
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I have some catching up to do- I am in the dog abuse/ mistreating people area of our conversation...
Rachel- Sorry to hear about your BIL's father.
Lizzy- I am sorry to hear about your mom.
Just a brief (or i will try to be) update about me. Last week of Jan. I was told my father was in the hospital and it didnt look good- that he had a few months left. He has chirossis which lead to kidney failure as well. I had started planning a trip for march to go up and see him, but Sunday the 5th- My family called and told me he had taken a turn for the worse and months was not weeks. So i hurried up to see him (literally buying a plane ticket on the drive to the airport) I got in at 11:52 sunday/ almost monday and got to the hospital. The nurse had said they werent able to wake him since around 5 in the afternoon (i got to the hospital around 1 am) around 2 he started moving so i called the nurse in and she was able to wake him. He had very few moments of clarity. But he did realise i was there and we spoke for about 2 hours off and on, when he was awake and stuff. By monday morning around 4-5 he was basically gone mentally. Well physcially too. Before he had gotten so bad he made his wishes known that he wanted to go home to die not in the hospital. We arranged for hospice care- they didnt even think he would make it through the night, but he did and they sent him home.
He really hasnt been there mentally at all, and it is heart breaking to see him like that. One thing he did tell me is that he was happy i made it before he died. I am closest to my dad and apparently he had been asking for me the whole day on sunday.
Um then i spent tue-thur by his side for the most part, trying to comfort my family. I left Friday morning and arrive home around 10 last night. I got less than 10 hrs sleep in those 5 days so i have slept the whole day away. not sure if it is just catching up or also jet lag. My dad wasnt responding at all on thur and most of wed but apparently fri he was. My strong suspicion is that he is waiting for someone to say goodbye to although he cant communicate who.... They literally have been saying it might be minutes to days that he will pass.
Thanks to Lizzy checking in on me and reminding me about my appointment for my lung, I got that rescheduled for Monday and I will let everyone know how that goes. Oh and waking me up this afternoon- LOL you somehow just knew to contact me at the right times.
Oh and something wonderfully awesome- during my lay over i was checking my voice mail and the case worker for the kids i mentioned WAY back when called and we are starting the homestudy on MONDAY!nervous and happy!!!!
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Texas: I am so glad you checked in!!!!! Good to hear from you! Congratulations on the message from the worker! Does this mean you will be homeschooling? Just wondering. Good for you!
Something to make you all laugh = FAMILY WISDOM! My sister: "Lizzy, I don't think you had cancer b/c it does run in our family. I think they saw a good insurance policy and lied to you to try to make money!!!!!!" Good times, good stuff indeed!!!!!
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Rachel- Re the NED thing: my doctor also was very clear in explaining that NED doesnt mean cured, it means just what Kel said- No evaluable disease- meaning that any cancer that may remain after treatment is too small to show up on the scans. But its presumed to still be there. Thats how some people with early staged breast cancer can go YEARS without a reccurance and then BAM it shows up in their liver.
But the term NED does exist because its not evaluble.
Have a lot more to say but my brain isnt working LOL need more sleep but DH left for work at 2:30 so i'm on duty LOL (kids)
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Tex - So sorry about your dad. Good that you got some time with him, that is important. My Grandpa was in a 'coma' for about 3 weeks and seemed to be sliding downhill so we all flew to him. then we all stood around his bed and said goodbye. We said we would take care of Grandma. Within a few minutes he opened his eyes, turned his head to look right at his youngest grandson and took some breaths then died. We were all standing right there. I was with my dad too. I wrote about that earlier. He was able to die at home in his room and I am grateful to my mom for making that happen. (((((hugs)))))0
