Illinois ladies facing bc
Comments
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Zap I was going to hang out on the corner of Fullerton and Clark for the marathon to see one of my friends running but I'm not allowed in crowds. They don't want me to get bumped. Not sure if I would be up for it anyway tomorrow. I'm still very sore. Looks like it's going to be a perfect day for the race.
mdg the first time my PS took the fat from my love handles and stomach… but he couldn't find enough. I kinda told him that there was more on my thighs but he seemed to want to go for the torso. This time he asked me and I sent him to my thighs. Told him if for some reason he couldn't find enough there then go where ever because I don't want to do this again. My entire upper thigh on the sides/rear area is pretty bruised. Looks like he went for a little bit on the lower butt too. I'm pretty sure he found plenty this time
You will not feel like working out after fat grafting. You will be sore but it's really not too bad. Granted I never took meds after the BMX so I might not be a good person to ask. I did take some Tylenol last night. I'm sure in a few days I will feel much better. The doner sites are more sore than my breasts but I do have a lot of numness up there. I'm a little sore on the breast area but not like my thighs where the fat was removed.
JSandstrom if you copied the period when you put in the link then it will add that as part of the link and not work. I assume you are using the link button icons to make the link. Sometimes though the link is just too long. To shorten the link I go here and make a shorter link: www.shorturl.com then use that in the pop up window fields.
Hope everyone is enjoying this wonderful weather. Great weekend!
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Lago and mdg, do you know how many days to take off work for fat grafting and nipple recon? I need to do the nipple and maybe not fat grafting but might need some lipo to fix my donor site. I've been postponing but I may be ready now. I'm worried I may have gotten my work calendar so full, it may not fit in.
mdg, I was at the breast surgeon in September for follow-up and she said recent study shows PET scans are not worthwhile in early stage. They would not do one unless I had symptoms.
Wow what gorgeous weather we have had after that lousy, rainy week. I will be outside all weekend for sure!
P. S. I meant to add that I would love to do an outing to the Botanic garden sometime. I love it there.
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TwoHobbies you really need to check with your PS. My surgery was Thursday morning. I was told that I probably could go back to work on Tuesday (If I had a job ) but woudn't know till my post-op on Monday. They assumed I didn't have a very physical job. I think physical limits will be at least 2 weeks. I also had revision done to lefty so that's a little more invasive.
I don't get scans unless there is a symptom either except my onc is still checking my liver due to some cycsts on initial scans my BS had ordered before surgery. As far as follow-up check out the links on this page under breast cancer: http://www.cancer.net/patient/Survivorship/ASCO+Cancer+Treatment+Summaries
Also this: linky
I think this stuff is dated 2009 so some things might have changed.
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Really quick stop by to post something for Zap-
Zap, as the veteren of having run 13 marathons, including the CM 4 times, the easiest way to actually see your runner is to tell them WHERE YOU WILL BE- at which mile and which side of the road, then be there! Have them LOOK FOR YOU- not you look for them. Spectators can not really keep up with the runners going by- it's a lot easier for the runner to know about where you will be and look for you!
I would suggest that you forgot about even trying to see them before at least mile 3 on LaSalle. The first 2 miles are so packed with runners and spectators it's just impossible. BEFORE the race starts, you need to be in place at your first spot. Once the race starts, you will not be able to cross the road in the early miles! Go BEYOND the 3 mile marker, stand/sit on the LEFT side and tell your daughter that is where you will be- somewhere between mile 3 & mile 4 on the LEFT side. She should run on the left side for that mile. Have an unusual balloon or sign for her to look for (my husband used to have a little parrot flag on a long rod that he would hold up so that it bent out over the top heads of other spectaors and I could spot him way far away!- but only because I knew he was going to be in that area!)
After she passes you at the 3-4 mile, you can easily go have coffee at a McDonalds, take your time (depending on what her pace is- she's going to be running for 45- to 90 minutes before you see her again), then walk about a block west to Wells Street and again stand so you are on the left side of the runners as they come back south. This is mile 11- 12. Tell your daughter to look for you on the left side as she is running between mile 11 and 12- then you just make sure you are in that area!
Seeing your daughter from mile 12 to mile 20 is almost impossible without a lot of running around. I would say forget it. My husband would take the red line down to Chinatown and he'ed just walk down until he was almost out of Chinatown (chinatown is VERY crowded because it is easy to get to) and again he would be on the left side for the runners- and I would look for him. Maybe right before the 22 mile mark. He'd then walk VERY quickly east to State Street and up State Street to Roosevelt Road- then east to Roosevelt Rd & Michigan Ave. Again he was on my LEFT as I was running and I would see him just before mile 26.
We would then meet up at our agreed after race spot.
This plan means never having to actually CROSS the street where the runners are and is really the easist and best plan we ever came up with. I never missed seeing my husband because I knew where to look for him. I'd usually tell him about what my pace would be and he would figure out when he had to be where... It worked out great!
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Jan.... thanks for the tip on where to stand and look. I have my onc running in the race as well as my 3 friends and 2 family members. It is so exciting to see this race. I would have loved to run this race but didn't train long enough and though about it to late. Hopefully next year.
Go Runners .....and Good Luck!!!
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Jan, thanks for the great detail on how to spot my dd. BJ, I suppose it is folly to think we could meet up. It truly will be a madhouse. This is her third marathon in Chicago and I have to say I get buzzed when I go. It is just so exciting. I hope she will be okay (I always worry). Thanks again, Jan.
Susan
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Twohobbies: I no longer work since we moved here but he said no exercise for at least one week, maybe two. I am also having areola grafts so I don't know if that changes anything.
Lago: That's just it, none of my docs did any baseline scans when I was diagnosed at all so who knows what is going on. I have zero piece of mind. I know I have to get over it, but I feel dismissed because I am "the easiest patient". Well many stage IV ladies were stage I once....
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Me again, and then I will stop. Just a drop in to say that my dd reminded me that I was unable to be at the Chicago Marathon five years ago to support her as I was in midst of chemo. Not chemo brain that I failed to remember (know) that, but rather, I was in a fog of fear. Five years later I am good to go, out of chemo and healthy and I am spotting my dd in her third marathon. Ladies, there is so much life out there to be lived. Discouragement is natural, but hey, I made it (knock on wood, so far...
)MDG, my protocol is as Lago's.....no scans unless I have symptoms. That bothered me originally, but I have come to accept it as an acceptable plan for me. All that radiation is not that great. If you really need one baseline for confidence, why not request the same? My mammos never showed cancer and so I asked to have an annual mri and I have never been denied by doctor or insurance. Good luck with getting some closure on what you need.
Susan
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MDG they did scans on me because my tumor was so big (though 7cm at the time. Ended up only 6.5cm but only 5.5cm invasive). My BS was pretty sure the chance of me having micro mets in my nodes was pretty high which would have staged me at IIIA. Being HER2+ also put me at a much higher rise for mets.
The thing is just because they saw nothing doesn't mean you are all clear. The tumors must be pretty decent size to show up on scans. The microscopic stuff doesn't show up. Also finding it early makes no difference in length of survival. In my case if they had found mets they would have done chemo first.
So I'm thinking the chance of you having mets is very low, and if there were mets it would be so small the scans wouldn't see it. Also your treatment (chemo and endocrine therapy) has a very good chance of taking care of strays. Sounds to me like your onc should explain this to you a bit more. I don't believe they typically do scans for everyone.
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We are all so scared at the beginning. You have an excellent chance of being clear.
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MDG - I am going to chime in on this topic as well since this is something that truly bothered me when I was first diagnosed. All the doctors I spoke to kept on telling me that they do not do scans w/o symptoms. Recently I went to a townhall meeting on breast cancer and the same answer was given regarding scans and that they are typically not done unless advanced stage or symptoms.
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Started my day today @ 7 a.m so didn't get to post a quote. This evening I found something else I want to share. Most of you have probably seen this at one time or other. I was just touched so much be reading it again. I hope it is not too long.
THE OLD PHONE ON THE WALL.... HELLO
When I was a young boy, my father had one of the first telephones in our neighborhood.... I remember the polished, old case fastened to the wall. The shiny receiver hung on the side of the box. I was too little to reach the telephone, but used to listen with fascination when my mother talked to it.
Then I discovered that somewhere inside the wonderful device lived an amazing person. Her name was "Information Please" and there was nothing she did not know. Information Please could supply anyone's number and the correct time.
My personal experience with the genie-in-a-bottle came one day while my mother was visiting a neighbor. Amusing myself at the tool bench in the basement, I whacked my finger with a hammer, the pain was terrible, but there seemed no point in crying because there was no one home to give sympathy. I walked around the house sucking my throbbing finger, finally arriving at the stairway. The telephone! Quickly, I ran for the footstool in the parlor and dragged it to the landing. Climbing up, I unhooked the receiver in the parlor and held it to my ear. "Information, please" I said into the
mouthpiece just above my head. A click or two and a small clear voice spoke into my ear. "Information." "I hurt my finger..." I wailed into the phone, the tears came readily enough
now that I had an audience.
"Isn't your mother home?" came the question.
"Nobody's home but me," I blubbered.
"Are you bleeding?" the voice asked.
"No,"
I replied. "I hit my finger with the hammer and it hurts." "Can you open the icebox?" she asked. I said I could.
"Then chip off a little bit of ice and hold it to your finger," said the voice...
After that, I called "Information Please" for everything.. I asked her for
help with my geography, and she told me where Philadelphia was. She helped me with my math.
She told me my pet chipmunk that I had caught in the park just the day before, would eat fruit and nuts..
Then, there was the time Petey, our pet canary, died.. I called,
Information Please," and told her the sad story. She listened, and then said things grown-ups say to soothe a child. But I was not consoled. I asked her, "Why is it that birds should sing so beautifully and bring joy to all families, only to end up as a heap of feathers on the bottom of a cage?" She must have sensed my deep concern, for she said quietly, " Wayne , always remember that there are other worlds to sing in."
Somehow I felt better.
Another day I was on the telephone, "Information Please." "Information," said in the now familiar voice. "How do I spell fix?" I asked. All this took place in a small town in the Pacific Northwest . When I was nine years old, we moved across the country to Boston . I missed my friend very much.
"Information Please" belonged in that old wooden box back home and I
somehow never thought of trying the shiny new phone that sat on the table in the hall. As I grew into my teens, the memories of those childhood conversations never really left me.
Often, in moments of doubt and perplexity I would recall the serene sense of security I had then. I appreciated now how patient, understanding, and kind she was to have spent her time on a little boy.
A few years later, on my way west to college, my plane put down in Seattle .. I had about a half-hour or so between planes. I spent 15 minutes or so on the phone with my sister, who lived there now. Then without thinking what I was doing, I dialed my hometown operator and said, "Information Please."
Miraculously, I heard the small, clear voice I knew so well. "Information." I hadn't planned this, but I heard myself saying, "Could you please tell me how to spell fix?"
There was a long pause. Then came the soft spoken answer, "I guess your finger must have healed by now."
I laughed, "So it's really you," I said. "I wonder if you have any
idea how much you meant to me during that time?"
I wonder," she said, "if you know how much your calls meant to me. I never had any children and I used to look forward to your calls."
I told her how often I had thought of her over the years and I asked if I could call her again when I came back to visit my sister.
"Please do", she said. "Just ask for Sally."
Three months later I was back in Seattle .. A different voice answered, "Information."
I asked for Sally. "Are you a friend?" she said.
"Yes, a very old friend," I answered. "I'm sorry to have to tell you this,"She said. "Sally had been working part time the last few years because she was sick. She died five weeks ago." Before I could hang up, she said, " Wait a minute, did you say your name was Wayne ?" " Yes." I answered. "Well, Sally left a message for you. She wrote it down in case you called. Let me read it to you." The note said, "Tell him there are other worlds to sing in. He'll know what I mean." I thanked her and hung up. I knew what Sally meant.
Never underestimate the impression you may make on others.. Whose life have you touched today? Why not pass this on? I just did..... Lifting you on eagle's wings. May you find the joy and peace you long for. Life is a journey... NOT a guided tour. I loved this story and just had to pass it on. I hope you enjoy it too.0 -
mdg - I did an areola graft on my original MX side. The PS I had at the time took the skin from my upper inner thigh, right at the crease. Would I do it again? No. But I say that only because I scarred terribly and had to eventually have a revision. The scar in my groin area is uuugly and it used to give me a lot of discomfort. However, the color match to my other (now gone) areola was just about perfect. So as long as you aren't a person who scars really badly, I do think the results look very good in the long run. My nip on that side was created by taking half of the other one and transplanting it. It's held up just fine. It is kind of ironic (bizarre?) that now that I've had the prophylactic on the other side, my only remaining original nipple is on the opposite side that it was originally born on! hah!
I did have a PET scan and a bone scan. For the life of me I can't remember why, but I think I might have been having weird symptoms? My Onc generally doesn't do any routine scans unless there are symptoms that warrant them.
The bone scan did show a tumor in the very top end of my femur. The original radiologist who read it and my onc both thought it was highly suspicious for bone mets. I insisted on a bone biopsy, and my onc agreed. The rad who did the bone biopsy told me he was betting that it wasn't mets. The initial path report was INCONCLUSIVE! So, they sent it to Mayo to be read. That was one hell of a long week, but finally my onc called me and said Mayo diagosed it as a tumor, but not bc mets. It's a benign tumor that's in an odd location for that kind of tumor. I have to get it MRI'd once a year, because there is a very slight chance that it could become malignant. So far, so good though.
Jackie, I've seen that story before and I love it. "There are other worlds to sing in" is a very comforting thought to me.
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Morning! Just chiming in too....no scans for me either. If I wanted one he would order it but since I am Stage I with neg nodes and no symptoms he doesn't look for trouble. I do however get an us with my mamm every year due to very dense breast tissue.
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Jackie I love that story
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7:51Am and the fi rst wheeled runners just passed my building.
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Jackie.. Great story, thanks so much. Just trying to catch up with you all. My DH and I are both having a difficult time trying to recover from the jet lag. Ughh! Both up at 4am every morning, napping during the day.... So frustrating.
Had to go in for follow-up with my PS last Thursday regarding my last cellulitis infection which had cleared up nicely, but now I have developed a "squeaky" implant on my radiated side. He is sure that it is due to some scar tissue trying to develop so have orders to massage, massage, massage. Still have appt for pre-op screening tomorrow afternoon and fat grafting the following week. Then I am going to take a break from all this and make decision about nips after the holidays. I am in no rush. NavyMom.... How did your tattoo appt go this week?
My ONC doesn't order scans without symptoms either, but I did insist on getting them before going ahead with my exchange surgery and he reluctantly agreed. Just as he warned, a suspicious tiny spot shows up on a lung that was then scanned again 6 months later and was determined to be an old scar from a respiratory infection. ONC says that unnecessary scans just lead to a wild goose chase in the name of defensive medicine on the doctor's part.
Jenny.... Sounds like you had quite an ordeal with that biopsy. Sounds like the same experience I had at a local hospital. So glad I won't be going back there..... no boobs anyway.
I am going to hop on my bike and go for a big bike ride today with DH. Can not wait to get out there. So sorry I will miss the lunch tomorrow. Would love to meet all the new gals and see you guys again. Another get together before the holidays?0 -
"Happiness is a perfume you cannot pour on others without getting a few drops on yourself." -Ralph Waldo Emerson
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Good morning everyone. We are remaining warm for now and I so am enjoying it. Able to see the house on the next street from me more and more. Way too soon we will be able to see the whole house...sob-sob. Once again it seems ( is this a sign of getting older ) summer seemed to start out just right and then all of a sudden it was flying by.
I hope you are all going to have a beauty of a day. It really is a perfect day. I am reminded that each day we have is special for something -- we just need to find what that is and expand it a little so we make it a good day for everyone we are around.
Be seeing you all later on today.
Hugs, Jackie
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Good Morning -watching the runners at mile 12
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Jackie. Loved the story... It is a beautiful day here!
Just popping in for a quick Hi....reading all the past few days posts....lots going on.
Best wishes to all!
NanaMarsha0 -
OFF TOPIC
Thanks Jackie, that was good.
INFORMATION PLEASE STORY
I had to snopes the story, trying to find a briefer one to pass along to friends, and found it's a reader's digest story, undetermined if true. Interesting additions can be found at www.snopes.com
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To be honest I don't care if the story is true. My gut say it isn't but I don't care. Love the message
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Hi Ladies!
Writing as a drive by to let everyone know, I am alive and kicking hard here in sunny and pleasnt Tucson, AZ!!! I am outside alot and do not get on as a routine like I use to!! I am happy here and so is my DH. Need more networking out here and am working on that as meeting new people and sisters in Pink is a process I am ready for!!!!
I am ok overall. I have had blood work done, not crazy about this Dr at all and will most lilkely look for another down the road. The nurse calls me, not the Dr and says I am pre diabetic and cholestral is high and is putting me on Lipitor. Well no to the med and off to learning on this new finding. I have read and it is impt for ALL of us to know here, that anyone with higher levels of insulin issues versus women with lower insulin levels, were twice as liley to develop breast cancer!!!IT is also linked with vitamin D needed as well , good diet and being predisposed.
What is hard, I eat well, my indulgence does come from some desserts and i guess that has not helped. I have some work to do and though I excercise daily, my Vit D level is 55 (improved here ALOT), and eat well, thin. ( cannot gain), so i work on muscle as osteoporis is another issue they were `concerned on.
I am excercising more here, have more peace and less stress. I urge anyone who has issues on sugar /insulin issues NOT to take it lightly and know that it can be arrested and dealt with. I know I have been not so diligent and it is all goin to be dealt with and not overnight as it did not develop overnight.
As i look at my BC diagnosis... all the signs were there prior.. insulin issues ( ignored it), LOW vitamin D level, stress was not being absorbed or handled right at all..diet was ok but I was not absorbing nutrients properly as it all was clogged up within!
Only having two years , recurrence is always a possbility and I know I am not where I should be in my endocrine system and yet, am grateful to know now, that this is a real issue and can be rectified. !!!!
So you all know, I am here for you in any questions or support you may ever need!!!
Hugs to all of you and always here!!!
Donna
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Marathon was great. Thanks again, Jan, as your suggestions were great. We did try to spot her at numerous places and that was actually good as I got my exercise! I was running like a crazy woman. My grandchild (only 4) was so excited to see her auntie and so prepped by her mom to look for her......well....auntie went right by her and grandchild was , "Why didn't she stop to see me?" That was after waiting for thirty minutes for auntie to show! Her times were disappointing...the heat was hard on her, but we all had so much fun. Now that they text where you are, it is so much less random.
Donna, good to hear from you. I do not think that cholesterol meds are forever. Of course if you already watch what you eat and exercise, perhaps they are. I am trying to reverse some stuff with the hope I can get off the high blood pressure meds and the cholesterol. My BP is now nomrl (but that is with meds).
Today being downtown with the crowds and the excitement, I thought of a BC walk. Any on the radar for us?
Rita, I saw on facebook that you were disappointed with Spoon River. My good friend (antique dealer) was thrilled with his finds.
Take care,Susan
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Donna - SO glad you checked in! I miss you girl! Glad you've settled in.
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There is a walk coming up on Sunday, OCTOBER 16th - in Libertyville - Independence Grove (beautiful place). It's the Making Strides for Cancer walk. I'll post all the details in a couple of days.
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Donna as a fitness person I am glad to hear of all the great changes you are making. That is impressive. I too had low vitamin D before my dx and had a lot of stress. I was pretty fit but could have lost a few lbs but was not big at all. I did eat healthy but not as healthy as it could have been and didn't avoid hormones in food or in birth control. I too have made a lot of changes. It's hard at times but this is one of the few things we DO have control over so I am trying to take control. I did not meet you as I just moved to Chicago in August but you sound so happy with your new life! I too have made changes and reduce stress. I gave up my high stress career and am now a stay at home mom starting a business of my own. I feel so much better without the stress. I am also happier...and so is my family because I am more patient, relaxed and happy. It is so nice to hear of all the positive changes you are making in your life. I don't even know you but I am proud of you!
As far as the marathon...I got to the gym this morning and was able to watch the second hour of the race whle I worked out on the elliptical. It was simply amazing! The winner inspired me....I was in complete awe at his abilities. I can tell you I exercised really hard today because I felt like I was trying to keep up with him! What an amazing finish in just a little over 2 hours! Unbelievable!
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Going on midnight and a couple of hrs. ago I decided to re-arrange my kitchen --- I know, sort of hard to do but I have a movable island and was tired of it being out in the middle of the floor. It had been there 8 yrs. and I have to pick 10 p.m. at night.....but sometimes I do things like that. It's all back together, floor swept and mopped etc. In a few days I'll probably decide I don't like "the new way" and put it all back but for now. It's ok.
Donna....it is so good to hear from you. I'm sorry to hear you are having several issues at once to look into, but hopefully it will all get un-tangled. I use to eat at least a tsp. of cinnamon per day and that kept my blood sugar on an even keel. I gave my cinnamon up ( though I still enjoy it from time to time ) and started eating dark chocolate.....and now it keeps my blood sugar stable and even. There are lots of things to do.
It is hard to eat "healthy" all the time. I try not to overdo too much on anything, but give myself permission to cheat now and then. That goes quite a way in de-stressing me. I think it is Wendy who uses the word moderation and I agree.
I off to get washed and into jammies....I'm feeling a little tight after the furniture moving....but the kitchen sure is better. I may even cook in their soon. See all of you in the morning.
Hugs, Jackie
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Life is not defined by what happens to us; it is defined by how we use our circumstances to make this a better world. Our destinations are not determined by the trails we inherit but by those we create.
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Good morning. Another gorgeous Fall morning as I look out and see so many brown leaves...and so many already on the ground. Sounds like you did your own Marathon Susan. Glad you enjoyed your day. The word exciting just keeps coming to mind---and a picture of you listening intently to your granddaughter.
Not too much on the plate today.....Dh has the day off ( as I'm sure many do ) so we will bum around together a bit unless I can interest him in some good hard work.
Happy Columbus Day to all.
Hugs, Jackie
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Wow TDM1 sounds so promising!!! Thanks for the link.
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