Can we have a forum for "older" people with bc?

IllinoisLady

What keeps faith cheerful is the extreme persistence of gentleness and humor. Gentleness is everywhere in daily life, a sign that faith rules through ordinary things: through cooking and small talk, through storytelling, making love, fishing, tending animals and sweet corn and flowers, through sports, music, and books, raising kids—all the places where the gravy soaks in and grace shines through. Even in a time of elephantine vanity and greed, one never has to look far to see the campfires of gentle people. Lacking any other purpose in life, it would be good enough to live for their sake. -Garrison Keillor

IllinoisLady

Beautiful sunny day today. I love it !! When I go to care for the kits at my friend's house they will be able to go out on the deck and bask for awhile in that sun. They love doing it but it has been cloudy the past couple of days. I had 'milk' temptations ( a cat treat ) to give them hoping to make up for it. Never sure though they do love the treats. Looking forward to being done -- not because I don't love doing it but because I hope to spend more time preparing our yard for full on Spring.

Hope you all have a fantastic day.

Stitch

Thank you all for the welcome, and encouragement to continue to sew.  I think this weekend I am going to crank out a couple of pillowcases made from ambience rayon lining fabric.  That might be easier on the head when the hair falls out - and even if for some reason they don't do chemo.  I seriously think they will though, as she went over the basic treatment plan, and it definitely included that.  Looks like pre-surgery, too.  I may also crank out a couple of chemo caps as I have plenty of knit fabric, but living in La, it's so hot in the summer, I have to make sure to use the cotton knit only! 

I think I'll go with a wig, since I want to continue to work whenever possible, and don't want all the questions from the drivers I deal with on a daily basis.  It took so long for my hairdresser to get my color exactly what I wanted!  Last appointment it was finally there.  Oh well, there will always be more hair.  

I spoke with HR yesterday, and will do the FMLA.  She kindly said that they would allow me to come and go as I felt I could during chemo.  Thank God for that, because they have told some people, depending upon the situation, that they could not come to work until they completely recovered.  

jo6359

stitch- I used beanies throughout my bald stage. I found in Miami it was too hot for wigs. I only wore wigs around certain family members and rehab meetings. Friends donated some really cool beanies. I started walking day 2 post-op. I never stopped walking and running throughout and continue to do so. I started socializing approximately two weeks post-op. It was on my terms though. I would have friends over for lunch or wine and appetizers. I chose simple foods to prepare. Cooking relaxes me. At the end of the third week I was going to plays and out for dinner. I couldn't eat anything because the taste of food was so horrific. I did enjoy the socialization. When I wasn't up to socializing I was honest with my friends. When I would go out with friends for dinner, I would tell them you have 5 minutes to ask me anything about my cancer and then I want to hear about your lives. It is so easy to isolate people when you're going through something major. It's still ticked me off when friends would say BMX is no big deal. Of course it is a big deal. Physically it's a big deal but emotionally it's even a bigger deal. With a lumpectomy or mastectomy the diagnosis is cancer. So yeah it's always a big deal. This is a great place for venting and support.

Stitch

jo6359, Already some of my friends are not wanting to hear me vent my worries.  I'm finding out early on which ones those are.  And they have their reasons I know.  it's awkward and uncomfortable for many people.  My biggest concern is my children.  I want to tell my very, very busy and anxiety ridden daughter about this over the weekend, so I've asked her to come by the house.  But, she's working, and it's never a good time!  My son lives a state away, so he will have to be told on the phone.  He's alone where he is, and that's going to be awful for him.  He has an electric car, so he can't just take off and come to see about me, unless he rents one.  He just started this job, so I want him to stay put, and not worry too much!  

Wren44

Stitch, I think your kids will take a cue from you. If you're matter of fact and emphasize that it's not considered at all advanced, it will help reassure them. If your son wants to come, encourage him to wait until Mother's Day. That's far enough away for him to think about it and not feel he needs to rush.

jo6359

stitch- it's difficult enough dealing with cancer and especially challenging when you are a mother. Mothers want to nurture and protect your children. You're going to have a difficult time giving your son the news over the phone.

We learn very quickly who wants to hear our truth about how we feel and what we're going through and those who need or want to hear everything's fine and it's no big deal. Finding that balance is a challenge. Some of my friends were angry because they felt I wasn't needy enough and others needed my constant reassurance I was okay. A couple of my closest friends would call me everyday and ask "Do you need me ? How can I help? Those two simple questions were music to my ears. Sometimes all I needed was a friend to sit with me and just talk about normal things.

carolehalston

Stitch, I live in Louisiana, too. In St. Tammany Parish between NO and Baton Rouge.

IllinoisLady

Simply give others a bit of yourself; a thoughtful act, a helpful
idea, a word of appreciation, a lift over a rough spot, a sense
of understanding, a timely suggestion. You take something
out of your mind, garnished in kindness out of your heart,
and put it into the other person's mind and heart.

Charles H. Burr

IllinoisLady

Sunny beautiful day here. Will be warmer as well. All the things I enjoy. Not sure how I will fill the day. Had a busy day yesterday. Went to visit a newly opened store in our little mall here. Seems for the 'stores' lost we are getting some nice ones back. Gordmans and very soon we will get a Jimmie Johns in the new little tiny mall across from the new Walmart's. This town is very small ( often does fairly big things though ) and since a lot of retirees live here I'm always a little concerned with a lack of growth. So, good to see the new places coming.

Hope you all have a great Saturday.

ChiSandy

keywestfan, great news about not just skipping rads but being able to take Arimidex only every other day. As to margins, according to UCLA, the new standard for "clean margins" is "no tumor on ink." So long as there are no tumor cells touching the Sharpie marker circle that delineated the circumference of the tumor+surrounding tissue removed, at least in L.A., that's considered clear. (Oh, and I got the RO's name wrong--it's Shaikh, not Shah).

Stitch, triple-neg or hormone-neg/HER2+ is much commoner in DCIS than in invasive carcinomas. (Most of the time they don't even bother to test DCIS for HER2 expression). It's not considered significant...except that you get to skip hormone therapy. With lumpectomy, radiation is done, but not always. If you have a significant gene mutation, you might be advised to have a prophylactic BMX with or without reconstruction. With DCIS, radiation is almost never given after mastectomy. And chemo is never given for DCIS, at least not for the past 15 years. You've got this, and we're "in your pocket" for every visit, test and procedure.

MCBaker

Stitch, I will repeat and expand upon Sandy's comment. My original diagnosis was DCIS. I chose mastectomy right off the bat, because traveling 80 miles five times a week for three weeks for radiotherapy was an incredible amount of trouble. That was all I worried about, even though there was a possibility of an invasive component. When I got the pathology report, I was not surprised that there was a small invasive component. Then Chemo was necessary. So take things a day at a time, and make decisions on available evidence, not speculation.

keywestfan

ChiSandy- Hope your packing is coming along well. Would like a gelato meet after your life slows. Just to clarify, although it’s probably obvious, Arimidex everyother day for a month, then every day for the five years. Having trouble staying asleep- how do you, et al, manage this? Has never been a problem for me before. I liked your men tion of Biofreeze for joint pain. I’m preparing for the Arimidex to start on April 9, my 85th and to end on April 9, my 90th. MO smiled at this- do not know what the smile meant.

IllinoisLady

Let us be kind;
The way is long and lonely,
And human hearts are asking for this blessing only --
That we be kind.
We cannot know the grief that men may borrow,
We cannot see the souls storm-swept by sorrow,
But love can shine upon the way to-day, to-morrow --
Let us be kind.
- W. Lomax Childress

IllinoisLady

Yay to everyone as it does sound like things are generally going better. Even is there is some trepidation to it. Sometimes circumstances narrow some of our choices, but we do what we have too and might as well dig in and do a good job of it. For so long I did use the mantra that it is amazing what you can do when you have no choice. Life is a choice and for me the only second choice is living as well as I can.

I'm wondering what the smile meant too, but instantly I thought of ah, a workable compartment with a time frame. I can smile now too -- we can live with many things almost easier if we know how long.

It is getting to the 60's today but of course the down-side is drizzle and maybe even a storm out of it. I was/did expect this so not a biggie though we were about to the point of yard work which will stall out a bit again. Well, actually since I have to do my little job today and tomorrow, that won't be bad. It will be nice to be done even though I love helping/playing with the kitties. It does tend to take me up to noon-time so the better part of my ENERGECTIC level time has come and will soon start to wind down. So will be nice to finish on Monday. Hopefully this 'wet' weather is only for today so about the time I'm 'jobless' again it may be dry enough to begin some outdoor yard work once more.

I hope you all have a fine day. Shout out to anyone not posting today or lately. You are thought about.

Stitch

ChiSandy, wren44, MCBaker thanks for the advice and information! Carole I’m in Baton Rouge! I’m doing all my treatment at Woman’s.

I am learning to not flip out. I know now that if the DX is the same after MRI, and I don’t have the genes, I may not need chemo if I do the lumpectomy with Rads. We shall see. I’ve started walking 2 mi a day, and I’m sewing again, so trying to be normal! I so appreciate y’all!!

MCBaker

Stitch;

IllinoisLady

Well, it waited all day, but the thunder storm with pouring rain and lots of lightning is here. I hope it settles down soon. I also hope once we are dry of this storm that will be it for awhile. Who knows though. We haven't had predictable weather for a long time now. Fingers crossed.

MCBaker

I don't know IL, saw reports of a heavy rainstorm on the Mississippi, Ft. Madison area.

IllinoisLady

Our storm was the part coming through Jefferson County so upper eastern portion of about the mid-section of Illinois. That would include Mt.Vernon, Dix, Woodlawn, and a couple of other very small towns. Our town while being very close to the others was not included. We did get the thunder, lightning, and very heavy rains, but I didn't notice much for wind which was a part ( according to my weather alert ) of the other areas. I'm still hoping there won't be much going on tomorrow. In fact, my friend gets home after dark tomorrow ( 8 or 9 p.m. ) so I'm really hoping once this storm moves all the way through we will start to go dry again as soon as possible.

ChiSandy

We got just intermittent showers, and it appears even that's through for the time being. Chilly, though--48 at dawn, then dropping into the 30s.

Checked the weather reports for Amsterdam next weekend--about the same temps as here but dry; and for Jerusalem from 4/1-5--starting out like Amsterdam and then only a tad warmer (not hitting 70 till 4/4). Didn't check Tel Aviv or Jericho, which are at or below sea level and not benefiting from mountain breezes. So no need to plan for different climates--much less wear the warm hooded leather parka, nor pack a down jacket, boots, scarf or any hat other than a sun hat for the desert and the beach. That'll make living out of a 25" suitcase and a small spinner more doable.Gotta go buy some "water shoes" for the Dead Sea, which beach & lake floor are pebbly and rocky--I have a pair of molded rubber slide sandals I wear at poolside, but will likely fall right off in the saltwater. Maybe see if I still have my Crocs? If not, there's always Wal-Mart. I figure mostly business casual (pants, tanks, light jackets, maybe a dressier top or shrug) and jeans & tee for the Dead Sea trip. May look for a pair of comfy walking shoes that are TSA-friendly (so I'm not tying & untying). If it's not wet out at ORD or JFK, I can probably even wear my cushioned Clarks flats, which made me more sure-footed on New Orleans cobblestones than my heavy Finn Comfort oxfords. Will pack sneakers, of course. And a little umbrella or plastic poncho--you never know...

ChiSandy

keywestfan, for insomnia I get pretty good results from 10 mg. melatonin & 25 mg. CBD (oil, pills or edibles) a couple of hours before bedtime. At bedtime, I take a little CBN as well. I got a "Night Serum" with CBD & CBN at Botanic Alternatives in Logan Sq. (they take plastic and are quite knowledgeable about their products and can make informed recommendations based on what problems you want to address); and pure CBN capsules from my dispensary, Dispensary 33 in south Andersonville. Not cheap--but they do help me stay asleep if I'm not falling-down-drowsy when my head hits the pillow. I will occasionally add 4-5 drops of an indica tincture (microdose of about 2-3 mg) and skip the CBN. I find that indica THC is sedating, but sativa THC is too sensory-stimulating (actually makes me notice pain more) and appetite-enhancing. Not for me, alas. Obviously, as a singer with asthma, I neither smoke nor vape--whether CBD or THC.

If you don't have a medical marijuana card, the process is much easier, faster & cheaper now than it was in Sept. when I applied. None of my treating docs were allowed by their hospital systems to certify (for the purpose of applying for the card) that I had cancer; so I found a doctor in Evanston, Toni Bark, MD, who certified me after two visits (her office also sells Receptra brand CBD oil, balm & "body butter"). Got my card the day before Thanksgiving,

Since then, things have changed dramatically: chronic pain (not just fibromyalgia or complex regional pain syndrome), migraines, osteoarthritis and back pain have been added as "qualifying conditions." But the biggest change is that taking an opiod (w/in the past 6 months) or even having an opioid prescription is a "qualifying condition," and you can apply at a dispensary and receive a temporary card on the spot. The dispensary closest to you is PharmaCannis in Evanston, though there's also one on Jarvis in Rogers Park. Only caveat is that they only take cash--until the Feds decriminalize marijuana, the dispensaries (in any state, medical or recreational) can't use the Federal banking system. But they all have independently-owned ATMs on the premises--or you can visit your own bank's ATM first and not pay transaction fees. Dr. Bark is a bit of a flower child, who is a big believer in yoga, natural organic vegan-pescatarian keto dieting and cold water plunges. She also is anti-pharma, but she'll still certify you. (She also does esthetic procedures such as laser resurfacing, Botox & filler injections--kinda paradoxical, no)?

I'll be back home 4/8, and probably back in action post-jet-lag and other appts. (mani-pedi, orthodontist, shrink, keratin blowout) by the 10th.

keywestfan

ChiSandy,

Again and Again, thank you for such generous information. I’ve been to Israel 6 times and remember the packing and envy your being there. Tonight, I always eat dinner with my son - who lives in Glencoe- on Monday nights and we will go, probably, to Reza’s. He did, a few months ago when we were there buy CBD oil just down the block on Clark. Owns stock in lot of companies and wanted to try it. Sounds like its my turn to try it now. So I’ll start with the oil and maybe -keyboard going crazy-CBN capsules and Melatonin. Just want to start slowly and hope my anxiety gets under control and insomnia resolves. Concerned about your chronic pain. The crazy thing is is that, at my age, I don’t have any.. One reason the Arimidex scares me so. The other, besides hair thinning( narcissistic , I know) is SE of depression, anxiety... Dr, Bark sounds like she could have magic charms. Asked Kellogg for shrink names and they gave me one on Davis St. but he sounds so non empathic and heavily into just prescrbing. Those I worked with in Evanston when I was practicing have retired. Do you know of anyone,other than yours obviously, who you might recommend? What does a keratin blowout do? How do you at your young age know so much?

carolehalston

Sandy, I hope you enjoy your travels.

IllinoisLady

"I will love the light for it shows me the way, yet I will endure the darkness for it shows me the stars."

– Og Mandino

IllinoisLady

Very wet outside from all the rain, but no more today. I hope the sun might come out later, but who knows. Our temps will stay in the 50's ( a bit lower at night ) and a couple of 60's. We could experience some rain showers along the way through next week, but they will hopefully be short and not nearly as productive as the last pour-downs.

We are trying something new on our way to perhaps having to switch some of our t.v. services. We negotiated a good price a while back ( reduced ) from Charter, but at some point it will go back up. So, we had decided that when it did, we would look for other alternatives. So, we are at this point using a Amazon Fire stick. We will hopefully with it become accustomed to how to navigate well enough ( me and electronics ) to have one of the other possibilities when there is a change in our current billing.

Hope you all have a wonderful day.

p.s. such good info and suggestions for everyone here.

pingpong1953

It looks like we may have a couple of days above freezing this week. Both of our cars are dark red and right now look like salt licks on wheels.

IllinoisLady, love today's quote!

Beaverntx

pingpong, well remember the salt covered cars from when I lived where it snowed regularly ( I grew up in the mountains in West Virginia and then lived in Ohio for a number of years). Never thought to describe the cars as looking like salt licks but love that oh so descriptive phrase.

jo6359

Sandy-I love visiting Israel and Amsterdam. Beautiful.

IllinoisLady

Recognize yourself in he and she who are not like you and me.

- Carlos Fuentes -