Can we have a forum for "older" people with bc?
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Nash, my Oncology Surgeon is also the Director of the Breast Center. He is 4 months older than me and there isn't a soul in that clinic that doesn't smile when they hear his name.
I panicked, though, when I learned he cut back his days. But he has reassured me that he is going to be there for me.
Catherine
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I totally agree, Jackie. I consider myself to be very blessed in being where I was at the time of my diagnosis and ended up with the best of the best when it came to both my oncologist and my BS. ( I vetted them thru my son's future SIL, who is a well respected pediatric dermatologist). With that confidence, I let them make the decisions they felt best. I came to realize they most probably saved my life by choosing to do chemo before surgery; something I had never heard of doing.
I had enough to deal with day to day without having specifics to focus on. I was not in denial, I brought someone with me to each appt, so if I missed something that was important for me to know, they could re-tell me. I knew it was serious, and large and in more than one part of the breast. I didn't necessarily want to know what stage, and had never heard of onco scores or fish#'s.
The very first time I met my BS, he put his hand on my knee and said " you've got a tough fight ahead of you for the next year or two, but I want you to hear me now- YOU WILL BE FINE!" And I am. I am still grappling with some issues, like swelling under my arms if I don't wear a bra 24/7, and I haven't discussed reconstruction yet, but I will deal with them as my Dr decides what is best.
DD#3 just arrived with my 2 grandchildren so I will finish for now. Have a great Sunday everyone. Our weather is incredible- upper 70's , low 80's, clear skies. Gotta love So Fla at this time of year.
Anne
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Hi everyone, I'm so sorry I'm not keeping up, I always did before and now I'm a wimp.
Welcome to any newbies we have, this is a great group. I'm really the only one who can't spell or type.
And Nancy u sound like all is I control and I like that ur takeing everything out, The have to at least be semi-retired now, mine were completely retired so it was good to get rid of my view of my belly button being blocked. Of ourse now I can see my hernia but that's another story.
Hi carole how are u doing, getting ready for the holidays?
And Jackie hows the weather down there, it's still snowing her and getting colder, so I'm wrapped in a couple of blankets, I woke during the nite and saw 2 little ears cuddle under my blanket and she hardly ever goes under so it must be cold.
BTW Chevy u'r not the only one that gets snow, well u are the only one that still pole dances so u are still unique -See u'll always be like a unicorn, oops that's really an old myth, really old. Didn't mean to insult u--or did I???
I have been so busy with work, everyone has furnace problems and they need them fixed right away. Yea well I told them my wand doesn't work like it used to so they have to have some patience. My phone rings I hang up and it rings again--well I have gotten names and addresses screwed up of course, but I told the guys to figure it out, not to bother me about it, after all my memory is chit and they know it. That's why I always wonder when I'll get fired. I've actually been working from home now for 1 year and it doesn't feel like it. WTF it went by so fast---way to fast.
Since I didn't really ketup I do hope everyone is doing good or at least OK--I'm still fooling around with this UTI but its better, just not feeling well, my usual complaint, like I always do.
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Hmmmm .... I wonder if it's "standard protocol" for all BC Surgeons to say "no matter what, you will be FINE!"?? Mine has now told me that on both of my visits w/ him. And, I haven't even had my surgery yet (that's on Wed.). I'm struggling w/ depression right now. I guess that is natural w/ any cancer diagnosis, but I "struggled" w/ it even before my dx & now it's worse. We lost our dog in April 2013 & she was our "child." If I could just snuggle w/ her & kiss her furry head again, I would feel better. We have no kids or grandkids (not by choice, because I was not able to have children due to my K-T Syndrome). The Holidays are a "lonely" time for those of us without family & I struggle with this every year. I know I must have a positive attitude to beat this cancer, so hope I can "turn myself around" & get somewhat "grounded" before Jim's knee replacement on Dec. 8. Thanks all of you for being here!!!
Hugs, Maureen
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If I missed anyones BD, this is why.
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And this too.
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Blondie, thinking of you ... did I read you correctly? ... maybe some radiation.
Nancy, how exciting that your son is coming from London. How exciting for him that he has the opportunity to live and work abroad. I taught in the Philippines and Germany. So many wonderful memories were gathered.
Welcome to all newcomers.
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Ah -- to rejoin this discussion. If you are religious/spiritual you will likely get what I'm saying -- doesn't mean anything is wrong if you don't. Just means we are all different and hopefully know ourselves better than anyone else -- at least with the things that matter most.
When I was diagnosed -- I had just lost my Ins. It happened to be time again for my yearly mammogram which had been followed my US's for a couple of years. When I found out my Insurance was gone --- I called up my PCP at the time ( big tip-off here ) and his nurse, when I told her I had LOST my Ins. and could not keep my appt., let out a gasp.
Now I did not actually understand this at the time -- I was still trying to take in and understand what having no insurance was going to mean to me. Later, after my diagnosis I realized that the Nurse and Dr. actually had known for some time that I had cancer, but had never let on. Then, suddenly, I slipped out of their fingers -- just like that. So, here I am -- and about three months after this incident, I was reaching for something in the back of my car -- a Blazer actually with the back cargo area. I open up the top door to pull a box out and the very tip end of the box hit me in the lt. breast, sort of mid-to upper interior area. I got a nasty bruise out of it. Funny thing -- I knew at my age that bruise would be with me a little longer. Two months or so later, with almost no change -- I knew something was really not right -- and that I had to figure out what to do about it with no insurance, and no money to investigate this problem. After a week of phone calls and door being close in my face, I happened to think about the fact that I had been in the service.
I made a couple more phone calls, was directed where I needed to go to apply - and before too long I not only had a Veteran's I.D. card, I was deep in the middle of every test it seemed known to man. Once they had a 'strong' idea of what was going on with me they farmed me out to the Women's Breast Center and to the care of my fantastic breast surgeon, Dr Marsha Ryan. I was terrified, but by the time I saw her for the first time, I knew what she was going to tell me.
My husband and I sat in her office/exam room both of us braced -- stiff as boards, almost afraid to take in too much of a breath for fear of shattering. Dr. Ryan walked in, and the room filled immediately with a sense of wellness, of comfort, of competency and almost seemed as though a warmth had entered as well, and we instantly knew that we were in the presence of a Dr. with the 'healer's aura'. Every thing that had happened up to that point took place ( or as I like to say -- conspired with the Universe ) aligned in an order --- from a Dr. who knew I had cancer but had not told me, and from a time when I lost Ins. and had nothing, and from a bruise that made me KNOW I needed to do something, somewhere, and from there being sent out of the V.A. and into a clinic where a truly exceptional Dr. awaited me and from whom I would not only receive healing vibrations immediately but would know what I was feeling.
Some really won't get that and believe me, that is ok. We are all where we are for reasons often un-known to us. So if you don't understand why I felt total and absolute trust in Dr. Ryan, and why I did not actually need huge amts. of information -- that is perfectly all right. There were many steps to get through along the way, but once Dr. Ryan walked in --- everything that happened up to that time instantly was revealed -- and the comfort and safety she brought with her just resonated completely through me and was so palpable that there was no mistaking it for me. The fact that my Dh felt it right along with me just enhanced the positive emanation's and gave me all the certainty it was possible to have.
In any case, for me personally, I think fighting through my chemo and rads became easier ( I had the information I truly needed ) when I did not end up with so much information that it might have weighed heavily while I fought through some of my chemo issues which were rugged for me, and 7 full weeks of radiation which meant that I had to leave home and stay in a motel all week, and come home on the week-ends. If I had realized everything I was involved with ( I knew from the instant my surgeon walked in I was going to be in the BEST of hands and likely be fine ) and all of the ramifications and possibilities, I think my great outcome would have been a whole lot more difficult than it was and I did have a fair number of rugged parts to get through.
Some people need to know more -- have to advocate for themselves -- I'm not in any way against that at all. I think you should. Had I sensed even the slightest thing NOT feeling right I'd have been "singing" loud and clear about straightening it out to my satisfaction. I just feel I was led ( maybe I should say had my insurance rug pulled out from under me and pushed head-long ) into a situation where the end result of it all was that exactly what I needed was set up and provided and it was left to me as to whether to accept the challenge of knowing a genuine blessing and gift from the Universe when it/she arrived dressed in a Dr.'s coat. I accepted and have not one iota of regret. That is not right for everyone, but it was for me.
It is gently snowing again outside. Weather report said from one to three inches. I'm starting to think -- is it going to be more. Sure looks like it could be. I'll see you all later. Going to look now for other entries to this very interesting topic.
Blessings,
Jackie
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NancyDrew, your biopsy story about scheduled for one and being told two at the time leaves me speechless. I wonder how/why that happened. You are so right that we need to be our own advocates. I did not understand your surgeon's reply.
Maureen, you are in my thoughts ... your husband too ... a lot going on for you with surgery and the holidays.
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Jackie, thank you for sharing your story; it's very inspirational.
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Oh, Maureen, the holidays get a lot of people down. Somehow you can coast along all year with your problems, but during the holidays, they become amplified.
I was four years into my first diagnosis when we got our Stewart, a mini Dachshund. He is 18 years old now and has never left my side. He loves my DH as well, but he is my dog and has seen me through some rough times, as he is now. On top of all the others things that need to be dealt with, I worry each day about this little boy of mine and the fear of losing him. So, I know how you feel about your little furry.
When you have no children or become empty nesters as we are, our animals literally become our children. Hang in there, the holidays will come and pass; just a couple of days. It's the lead-in and those Hallmark moments that make you realize yours is not the picture perfect life as those depicted on TV. Believe me...you're not alone.
Blessings on you, dear heart.
Catherine
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"I did not understand your surgeon's reply."
Sally my take on the surgeon jumping right in and mentioning her size I interpreted that as avoidance. Certainly he wasn't going to bad mouth her, a colleague in the same facility, so that was the best way he could diffuse the incident.
Certainly he could have defended her by saying....well, she's just being super careful and she has done that with other biopsy patients, etc. But he offered noting but that remark about her size.
I thought maybe I was misreading his response, but DH felt that same way, as well.
Also, the surgeon could have said....let me consult with her and discuss what she saw and if necessary, we'll have you back in again.
Catherine
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While I'm one of the people who want to know everything and research on my own, I agree that sometimes not knowing is a good thing. Would anyone ever have a baby if they knew ahead of time how tired they would be? Would teens ever happen if we knew how obnoxious they could be? So going in with optimism and a feeling of confidence makes challenge easier. I also liked Michael J. Fox "If you worry about something and then it happens, you've gone thru it twice."
Mojim, Let your doctor know about the depression. It's a natural response, but you don't have to go it alone. Most hospitals have social workers who work with cancer patients. Talking to someone helps. I know what you mean about your furchild. The day we decided I needed a mastectomy was the day we had to release our cat, Mocca, from her pain. I still really miss her. She was my best cat ever, and we've had quite a few over the years. Now we have foster cats from the shelter. We keep them until a better home turns up.
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"Some really won't get that and believe me, that is ok."
I get that, Jackie. Here's how I interpret the events.
Had you had insurance you would have been in the hands of an unethical health provider (who Lord knows how he can put his head down each night, along with his sidekick, the nurse) and can't say where that would have lead you.
It was fortuitous that you had no insurance and even more that the bloody door gave you that bruise. A guardian angel sent you that knowledge that you could get insurance having been a Veteran which brought you to Dr. Ryan's door.
You sure took the long way to get to her, but you did.
I truly believe in my heart of hearts that we have angels assigned to us who watch over us.
I'll give you a quick tale: 6 months ago I had my annual with my regular doctor who recommended I cut down on my BP meds because my BP was normal. So he prescribed another, milder medication. Okay, I thought, reveling in the fact that I was healthy and maybe soon down the line I can phase out this med, as well.
Three nights later, I hear loud screaming in my dream: Wake up, Catherine...wake up Catherine. I sat up and my heart was actually flipping over onto itself. Literally somersaulting. I woke my DH up and said...get up, I think I'm in trouble and you might have to take me in. Well, I sat there taking deep breaths and it settled down a bit.
The next day I started reading about this particular medication and clearly what it did was almost completely deplete the Potassium from my system when made my heart to funky stuff. I went back on the old med.
So, who was that screaming in my dream to wake up? So, yes, I believe we are watched.
Catherine
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Yes, you have it perfectly Nancy Catherine, perfectly. We are never, ever, even when we think it with all our heart and soul, alone.
Blessings
Jackie
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My tale of the universe aligning itself when I needed. My Blue Cross policy was one that shut down with the new Affordable Care Act. When I ran the numbers it looked like I'd qualify for the federal tax credit, which meant I had to apply for a policy through my state market on line, and we all remember what a disaster that was. It took weeks, my online application never did get processed, and finally I got a response from my paper application that said they thought I might qualify for the new expanded Medicaid and that I needed to apply for that. I filled all those forms out, again waiting weeks, thinking I'd be denied and would then have to hustle and sign up for an insurance policy. It wasn't until 9 days before the final deadline that I got the call that I qualified for Medicaid. I still don't understand it, but I've not had to pay a $560 monthly insurance premium this whole year, and Medicaid has covered all my cancer bills, even the genetics testing. The only bill I've had to pay was the $2/visit copay to see the doctors, and the $120 fee for the dietician consult. I did notice in the fine print that when I die they will take the money back out of my estate, but hopefully that won't be for another 20 or 30 years, and I don't have any kids so it's not like anyone is losing their inheritance. And I guess if I use up all my money that will be that.
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Puff -- we do have Angels and others watching over us and making sure that the threads match up and weave together when they need too. It is a great feeling I've come to enjoy and not take for granted but be peaceful and comfortable about.
I just wrote a pm to Mimi. I can't remember if she had something going on or not, but we haven't heard from her since the 7th. Just felt I needed to check and will have some rosy color in my face it I have forgotten plans that were discussed earlier.
Jackie
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Tekka, I get their catalog. They've got some yummy candies and baked goods and love their undies. So cozy, especially this time of the year.I've thought of making a trip some day from New Hampshire.
Was it snowing there?
Catherine
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Teka -- just to let you know ( though my budget squeaks and groans wildly when I do make a purchase there ) that I get the catalog and love, love that it. I can barely imagine what it would feel like to be able to visit the store. I'm jealous, but I'll hang in there. We do travel about 80 miles to go to a Trader Joe's. Keep hoping that one of those and if fortunate maybe a Costco will magically get closer to us one of these days.
The bane of living where we do which I love is that we do not have great access to some of the ( at least to me ) exceptional stores.
Jackie
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Thanks everybody for the warm welcome. I ended up having a great time with my grandson this weekend and have a positive attitude going into next week. I have a new 6 week old little g randdaughter . You forget how small they are when born. They are all a blessing! god bless all
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It's been a long time since I posted so I'm way behind on any news from all of you. And I know there are some new friends to read about and get to know. Seems the last time I posted I was traveling to Minnesota with a friend who believed she had cancer and was headed for a consultation. Surgery was Friday and it turned out to be a benign tumor in her salivary gland. Mayo clinic no longer recommends a fine needle biopsy of salivary gland tumors because they are so often not able to do accurate pathology reports. So the biopsy was pointless, but the surgery went well and things look good. Hurrah.
AND my clown business has keep me hopping. I had a party last week-end, a full day Wednesday at a business expo Wednesday and two parties yesterday. So, now for the surprise, I've been hired to clown every Tuesday at a Pizza Ranch. I started last Tuesday - they called me that morning. So you can see I clowned almost every day this week and fell into bed each night. The schedule will ease up lots now, so I'm happy to have the Tuesday night gig. I"ll do balloons one week, face paint the next. It seems like a huge obligation cutting into the do nothing regularly kind of schedule. But they pay me for three hours work and give me a giant box to fill off the buffet and take home. The kids were fun and the restaurant staff nice. They already know I'm heading to Texas the first week of December (Hey Sandra!). You can see I haven't forgotten my friends, just needed an evening to catch my breath. I'll do some reading tonight and get with the program again. Thanks to those who checked up on me. I haven't been kidnapped, but do have a plan to go visit that old boyfriend again in December with an invite to stay the night! Do you think I should wear my costume?
One more thing. The little kids are so wonderful. For kids three to four I carefully place an invisible ball in their hand and ask them to pitch it into the paper bag I'm holding. The when the invisible ball flys through the air I catch it in the paper bag snapping my fingers in the side of the bag so it sound like it is plopping into the bag. The kids actually line up to do it over and over feeling so proud they can get it to land in the bag like magic. Just gotta love the smiles you get.
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Jackie, it was so interesting reading how you started this whole thing.... And I just wanted to comment on this part......
"My reactions usually fall in the range -- boy you better need that stuff really, really bad to take the risk of the side effects it has.
So, I think too, in a lot of cases --- if we had total awareness of all the things, side effects, and total scope of the journey we end up going through -- it might in many ways be more difficult, and we might be looking for shadows everywhere. Still, the bottom line is -- I wouldn't have changed a thing about how I went through with all that transpired for me."
I don't think I would have changed anything either, but that's because I didn't know any different... I mean with taking Tamoxifen for those 1 1/2 years. And waking up one morning, and couldn't hear anything...... Or very little anyway.
And I researched this, getting more afraid, when after a couple weeks it didn't clear up, I went to see my PC.... SHE had no clue, other than to have me treat this as allergies, with the Claritin, nasal sprays, etc.
After another month of nothing, she made an appointment with an ENT.... After the exam, HE said it was permanent profound hearing loss, reason unknown. And I had to get hearing aids.
I reasearched this, asking my Oncologist if it could "possibly" be the Tamoxifen... I asked the ENT the same thing. They both seemed boggled by that question, so I researched it all myself. I quit the Tamoxifen, because that was the ONLY thing I was taking that could have caused this.
I found a lot of articles on the Internet, about this happening, because "In "certain" women, with this "certain" gene, they can have a small "infarct' in their brain-stem, near the 8th cranial nerve, causing that stroke, which caused the deafness"
And even the SE's listed on the Tamoxifen mention "stroke" as one of the possible SE's. But I never THOUGHT it would happen to me.
I copied and printed all of this information off, and the Web-sites... 5 pages worth.... I sent them to the drug manufacturer, with some of the pills. I sent this to my Oncologist, my PC, but none of them could help me understand what happened.
So yes, you have to be your own advocate... and look at things that happen, as "well, they did the best they could, knowing what they did."
And I don't think I would have changed anything either, because I would have always been afraid that I SHOULD have taken the whole 5 years of Tamoxifen. At least I tried it. I stopped taking it, and never went back to my Oncologist... she just didn't take the time, to listen, or try and figure out what happened... She just wanted me to take Femara.... and by THIS time, I didn't trust her.
If your team won't listen to your fears, then it's time to figure something else out.....
Oh! Good to see you Meemers! Sounds like you are having fun! I thought for sure you had up and DID it! Ran away with that "person" and got yourself kidnapped! Ha!
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We never encounter a mountain greater than
doubt. Doubt is a deceiver. It is as a thief in the night.
Remove it, do not let it come nigh your dwelling.
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Miminiemi: You made me smile at the mention of Pizza Ranch. I used to live in southern Minnesota and we had a PR. Great buffet. Now I'm hungry.
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Mimi, big congratulations on the new Tuesday gig. Isn't it wonderful to know you will always have something to do??? One of the reasons I like my job so much is that pretty much without fail -- I am going to get 6 hours -- working Tues. and Thurs. morning. I also work either Friday or Saturday night for three or four hours which fills out my paycheck nicely and is needed. That is subject to more change though. It is ok with me.
I think one of the benefits of working after retirement is that you can have better general flexibility as you don't need the 9 - 5 routine weekly for a well fatted up paycheck.
Nice to hear that you are taking some time in December for yourself. Also nice that you will see your friend again. Somehow I just get the feeling that it likely means a lot to him -- and sometimes maybe it is good to do some things just because we can.
Glad you all understood what I was saying in some of the previous posts. I so often rely on "quotes" because I do not actually have a way with words. I look at a post I've done later, and even I don't always understand what I was trying to say. It sounded right when I said it, but when I go back, often I find miss-spelled words and the whole concept seems just a little skewered when it seemed a lot more concise when I originally put it there. So -- at any rate, big thanks from me to you.
Was also wishing that we would have a Target store closer to us. As so often happens, we lost our K-Mart after several yrs. of Walmart being almost across the street from it. We do have one that is 20 miles from here -- but we don't just pick up and go. Usually try to have a couple of other stores on the list if we do. We did get our own Kohls, but it is sort of the third cousin and is not stocked as good as most of the more MAIN for want of a better word stores. I will say though -- at least we have one. Now if we could just get some other good ones. We had heard an I-Hop restaurant was coming to Mt. Vernon ( 20 miles away ) but are still waiting and I wonder now if it fell through. If so -- major disappointment on my part. I loved our California I-HOP.
Well, our snow came yesterday as billed. It is nippy outside, but not as bad as I feared. Murphy's Law struck. Our furnace is not working. It is a big commercial unit that sets outside. A little less than two yrs. ago we replaced most of the expensive working parts with stainless steel -- at a cost of nearly $2,000.00. So, we have a call into the company that did our work. They do not know if they can make it out today or not. Did not have much trouble getting here when there was $2000.00 worth of encouragement -- but this trip could well be a freebie -- yawn!!!! Now, shame on me, I think cold weather tends to wake Murphy up for a lot of people and this is a pretty good company. Still, it would be nice ( thank goodness we actually have two I-Heaters ) to figure out just what is going on. Dh thinks we need a new thermostat even though the overall behavior has little to do with the thermostat -- but he may be right. We will get that done and go from there.
Shuf, Nancy Catherine, and MoJim -- hoping you just hang in there. Everything in good time saying the person with the least amt. of patience that I know of right now. See you all later, I have to get out and go feed my feral cats. Haven't seen the three-legged one for a couple of days so hoping he is all right. Talk to you all later.
Blessings,
Jackie
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Cruise, cup of tea, warm blanket...anything but the freezing and snow of this morning. My dog didn't even want to go out! Sun has melted off the snow, but it is still brrrr cold. Thursday I get to have lunch with my granddaughters' school. I was thrilled to be asked because their mother doesn't usually let me know about these events. My son who lives in Tennessee will be 25 on Thursday. He was a slow starter but is finallygetting there. We all do eventually.
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Hello everyone - I got some good news tonight. My HR2 test came back negative. I'm so relieved. I know it's just a snapshot, but I'll take what I can get.
Next step is the surgery on December 12th at 7:30 a.m. No doubt more information will be available in terms of staging, etc. I have a few weeks to get the house looking a little festive for our son who arrives on the 20th. We can't wait.
Today is the first that my heart hasn't palpated trying to jump out of chest.
Gloomy/doomy day...cold, sleet and ice. Outside looked like an ice palace. So glad the little furries are trained to poop/pee in the sunroom.
Catherine
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nancydrew8....so glad you got a good report on your HR2. It's so nice to get some good news. I know you will feel some relief after your surgery. I am finally done with Drs. for 3 months. Just in time to enjoy the holidays.
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Nancy Catherine -- One hurdle done -- you're on the way now. Nice to get a start that can give you some comfort too. It is how it works best -- one step at a time. You should end up with a pathology report after your surgery ( not sure how long the report actually takes but I think not long ) and most of the time that helps in determining anything that might need to be done afterwards.
Good for you -- standing around and waiting is hard to do and leaves a lot of room for "thoughts" so doing something gives you a sense that you're taking charge and 'fighting' and doing what it takes for wellness.
We have had snow several times throughout the day but nothing that could really stick and accumulate.
We were able to get our furnace repaired as well. Two of the stainless steel jets were clogged and a switch had broken. Our furnace is outside our house ( not sure I said ) so not fun when it needs repairs. Glad to have it going though. We don't keep the house super warm -- but I was missing our heat for overnight and the few hours today until it was fixed.
Yea -- life is good.
Jackie
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Nash -- good for you too. It is a great time to get a break from medical issues -- great Thanksgiving, Christmas, and New Year's. All great celebratory times. Hoping our weather is nice for travelers at that time.
Jackie
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If I missed anyones BD, this is why.
And this too.
