Can we have a forum for "older" people with bc?
Comments
-
I seem to be doing ok so far on Letrozole, other than the occasional sweats, slight morning stiffness and increased appetite. Two arthritis-formula time-release acetaminophen help minimize the morning stiffness, and a celecoxib in the morning relieves it. As for the sweats, i like to stand beneath the ceiling fan.
The only pharmacy willing to order a specific brand of generic letrozole--Teva, which I thought had the lowest additive list and mildest SE profile next to Femara--was a little family-owned neighborhood one with a Kosher deli up front. They apologized that all they could get was Roxane (Boehringer Ingleheim’s generic division); but it turned out that the Roxane had the purest formulation of all, even Femara. But now for my third refill they were able to get only Teva rather than Roxane, and I think the sweats are a bit more profuse. But it could just be that most SE’s tend to kick in around the third month or so. I do have 90 days worth of Femara (Novartis UK) purchased online from CanadaDrugs.com (less than 1/4 the US price) and shipped by River East Supply in London, and am awaiting confirmation from Novartis that it’s not counterfeit (had to send them photos of the packaging & pills). That’s why I filled the Rx for and began taking the generic. I hadn’t heard back from Novartis since late January, so when my last generic Rx had run out I took the first two Femara and noticed no difference in SEs between it and Roxane’s generic. Novartis finally e-mailed me back last week to request photos (which I texted) and perhaps a sample for assay (at over six bucks a pill, not gonna happen, though they said they’d replace the pill if it’s real and the whole batch if it’s fake--both replacements being the US version. Just too risky....and too much delay...sending it through the mail or even FedEx). Happy is overweight (15 lbs when he should be 10-12), but the cat in the photo is definitely an “obeast.” A friend of mine has an orange tabby who is nearly that fat. I joked about “feline Prader-Willi syndrome,” but he says his patients tell me their male middle-aged cats seem to have insatiable appetites.
Got a cholla cactus story for you. Back in 1999, we visited a resort outside Phoenix for a cardiology meeting. One afternoon after the breakout sessions were over, we took a Jeep-caravan tour into the Sonoran desert. Our tourguide (an Italian cowboy who was actually an extra in spaghetti Westerns) gave us the warning lecture about how cholla can sense body heat and their prickly balls jump and latch on to flesh--and the more one flails about trying to remove them, the more needles dig into hands, arms, and even face. Gordy was wearing jeans & high-tops, and with typical teenage delusions of invulnerability, stepped backwards without first looking. A cholla ball dug into his calf, right through not just the denim but the top of his sneaker’s leather heel collar. Our tour guide had to use a pair of hemostats (apparently standard equipment when leading non-southwestern tourists through the desert) to yank it out, He then flicked his Bic, burned off all the spines, cut up the inner fruit and passed it around. It tasted delicious. But definitely not worth the risks of picking it.
0 -
Thank all you sweet ladies for taking the time to read my poem. I used to write poetry when I was young. It seemed I could get caught up in the emotions of the words like music or a song. I guess that's really what songs and music are-expressions of feelings. God gave music to the human soul to be used for expression. Whether joy anger or sadness it serves a purpose. I think it moves us in ways nothing else can. Poetry, music, songs or just words to express our feelings I think is very important especially here where we are dealing with so much pain, fear, and worry.
0 -
We had a small, but similar cactus in a small pot. My son offered to pay me if I would kill it. It had the same habit of sticking you when you didn't think you were close. Easier to pull out, however.
We went camping in Big Bend National Park in Texas. It's desert and we had the usual encounter with a cactus - which we lost, of course. DH went to the park store to see if they sold tweezers and came out laughing. They had a whole wall of tweezers!
0 -
Lew died this afternoon. He was worse again this morning, the doctors had a conference with the whole family and explained the poor prognosis and we were all in agreement to stop the respirator, which we did. We were all with him (except his brother Jerry from California), and his sister Diane had a video on her phone of her and Mildred singing Jesus Loves Me that they played by his ear, there wasn't a dry eye in the room. We had hoped he'd be able to donate his corneas but his eyes were so swollen that wasn't possible. We're hoping to have a Mar 25 (Good Friday) memorial service, but need to see if that works for the funeral home. My cousin picked up my dad and brought him here for a visit, at 89 I didn't want him driving here alone.
I'm in such a fog. I held together pretty well most of the time at the hospital where I could be in "nurse mode" as his advocate, but can break into sobs at the least thing here at home.0 -
Oh, Puffin, I am SO sorry! Now is the time to let others be strong and comfort you. May Lew’s memory be for a blessing.
0 -
Puffin.... I was so afraid this would happen.... but thank God Lew doesn't have to go through any more.... When my Mom was so bad, all of us gathered by her bed-side, and yes, we all sang "You are My Sunshine" to her one more time... She also sang Jesus Loves Me to my Brother and I when we were little!
Just don't do too much right now.... Take care of yourself... I'm sorry... (((( Hugs Puffin))))
Lew is in a beautiful place now.... xoxo
0 -
This is the first song we learned in Sunday School when we were kids... I still remember all of the words...
0 -
0 -
Oh Puffin. I am so sorry. I pray for strength for you. We will be here for you.
Sharon
0 -
As I experience it, appreciation of beauty is access to
the soul. With beauty in our lives, we walk and carry
ourselves more lightly and with a different look in our
eyes. To look into the eyes of someone beholding beauty
is to look through the windows of the soul. Any time we
catch a glimpse of soul, beauty is there; any time we catch
our breath and feel "How beautiful!," the soul is present.
Jean Shinoda Bolen0 -
Oh Puffin, I saw your name, and glanced over to immediately see your first words. I gasped !!!! Not sure why because his injuries from your description, were in fact devastating. Like I'm sure every single person here ---- I did not want this for you or him. I wanted to pray it all away. Sometimes God has other plans for our life. That doesn't ease the pain and sorrow.
I, like all your sisters here am shattered for you knowing that deep inside there is strength to call forth. I now will pray for your strength to come and hold you up when you need it most. I will pray that in time, the right time your heart will become much lighter and have room for memories that will be able to make you smile through your tears again -- to re-experience all that was good and fine. Peace to you and to all of your and Lew's families.
Jackie
You Raise Me Up
When I am down and, oh, my soul, so weary;
When troubles come and my heart burdened be;
Then I am still and wait here in the silence,
Until you come and sit awhile with me.You raise me up, so I can stand on mountains;
You raise me up to walk on stormy seas;
I am strong when I am on your shoulders;
You raise me up to more than I can be.You raise me up, so I can stand on mountains;
You raise me up to walk on stormy seas;
I am strong when I am on your shoulders;
You raise me up to more than I can be.There is no life - no life without its hunger;
Each restless heart beats so imperfectly;
But when you come and I am filled with wonder,
Sometimes, I think I glimpse eternity.You raise me up, so I can stand on mountains;
You raise me up to walk on stormy seas;
I am strong when I am on your shoulders;
You raise me up to more than I can be.You raise me up, so I can stand on mountains;
You raise me up to walk on stormy seas;
I am strong when I am on your shoulders;
You raise me up to more than I can be.You raise me up to more than I can be.
0 -
Chevy, I'd love to just take it a bit easy, but I'm his personal rep so tomorrow will be meeting with funeral home, contacting places like Social Security to stop payments and supplemental health insurance to stop bills, writing obit this afternoon, finding photo to go in newspaper & on funeral home web page, etc. People are keeping me stocked with food so I don't have to cook. Have many friends taking care of me, and Dad will be here with me at least until Friday.
0 -
Puffin- I am so sorry to hear of Lew's passing. My heart breaks at the thought of having to shut the respirator down. Having gone through losing my husband, I offer a few pieces of advice. First , make sure you take someone with you when you make arrangements. All 5 of my children, plus one SIL came with me. For me, the words the man was saying might have been Chinese or Greek, and I wanted out of there, so I was agreeing with whatever he said. Thank God my children, and especially my SIL, asked questions, or told me that we didn't want this or that. Months later they told me stuff that had gone on that day, and I still have very little memory of it. In fact, I thought I had planned a military funeral, which should not have cost anything, only to find out their idea of a military funeral was to have two soldiers there to present me with a flag, but the funeral cost thousands of dollars.
Second piece of advice- go easy on yourself. Grieving is different for everyone. The five stages of grief are pretty well known. But I didn't know that you go thru each one over and over and you don't go through them in order. You can be accepting one minute and angry ten minutes later. Mostly, I was numb. For a long time. It was to the point where that my kids told me what to do, like get dressed, eat , take a shower, and I did it because I trusted them. Be nice to yourself and don't judge your behavior. Accept help offered. Let others do some of the detail work.
And finally- don't make any major decisions for a while. A few months after Bob passed, I decided that I needed a car in Ga, because I was going to be flying back and forth and needed a car while there. Again my oldest DD, and my oldest DS came with me. Even with their help and advice, I bought a car (that I love) but for the first time in my life, I have car payments. I walked out of there, saying to them, how did I just spend $27,000 on a car? Then I did it all over again and bought a new car for Fl at about the same amount, but paid cash for the second one
I am sharing my story with you, because I know how lost I felt without my other half. He made all the tough decisions liking bartering for a better price on our cars, and stayed calm and sensible during really rough spots. I can get through a crisis, like his individual health issues, or one of my Kids needing stitches with a no problem. I might have a mini- breakdown when the crisis was over, but I got through the crisis. Problem was, this crisis didn't have an end. I still think about sharing news with him and it's been over 3 years. I am just starting to be able to say "my" children instead of "ours" and to speak as an individual "I" instead of "we". Please go easy on yourself and know that we are all here to listen, Andre are all thinking and praying for you aNd your family.
Anne0 -
(((((((Puffin))))))) Anne has good advice. Let friends and family comfort you. And grieve as long as you need to; there's no timeline. My thoughts and prayers are with you and your family.
0 -
Puffin, I am shocked and saddened by this news. Lew will be missed by so many people but especially you. I wish I could do something to make it better for you.
0 -
Oh Puffin, my very deepest sympathy to you and your family. Our sisters have given you great advise for this time. Just know that my thoughts and prayers are with you. Try to take care of yourself and let others help with whatever they can.
Peace,
Bonnie
0 -
thank you for your excellent advice Anne, I will take it to heart. Spent today writing his obituary and I need to decide on a photo yet before we meet with funeral home tomorrow afternoon. And then since I'm his personal rep I'll need to start sending death certificates and making all the notifications.Dad is here with me now. He sorted through the papers in a large rubbermaid bucket for HOURS today, found more uncashed checks, found a year's worth of envelopes from a bank that had never been opened.
0 -
Puffin I am so sorry for your loss. Sending big hugs to you!
0 -
When the hard times of life come, we know that no matter how tragic the circumstances seem, no matter how long the spiritual drought, no matter how long and dark the days, the sun is sure to break through; the dawn will come. The warmth of his assurance will hold us in an embrace once again, and we will know that our God has been there all along. We will hear him say, through it all, "Hold on, my child, joy comes in the morning!"
-Gloria Gaither0 -
Dear Puffin, I don't often check in, but I had to respond. I am so very sorry for the loss of your Lew. Praying that you find strength and comfort from your family and friends during these tough early days and beyond.
(((((((Hugs)))))
Paula
0 -
Dear Sandra & Mike, Prayers for Mike & you, Sandra, and all those who will be taking care of Mike.
(((((Hugs)))))
Paula
0 -
Puffin, I am so sorry for your loss. Sending prayers and hugs to you
Sandra, sending prayers to you and Mike
0 -
Dear sweet Puffin, the news of Lew's death hit me like an arrow through the heart. I absolutely cannot imagine what you are going through! Bless you and you make your way through these first days and beyond.
0 -
Puffin - I don't know about your state, but Fl has two versions of the death certificate- the short one and the long one. Some places will accept either, but some places will only take the long version. You get the ne of each "free"but have to pay for more. I think we got 10 of each.
And again, I know how you feel, finding checks and paperwork you knew nothing about. My DH, for reasons I will never understand, told me over and over that he had told our oldest son everything we needed to know. He said that it included bank accounts and passwords, insurance policies and who to contact. I had no reason not to believe him. Unfortunately, he told my son I had all the information. To this day, I don't know that we have seen everything. He was OCD about money and never wanted me to know exactly how much we had. This was after 42 years of marriage.
When my SIL passed 14 years ago, my brother found cash all over the house. Guess you never know everything about your spouse.
I am sure you will get through this week pretty well, because there is a lot to do, and a lot of family and friends. It is when that is all done that you will first realize what has happened. Again I say be easy on yourself. Don't buy into "you have to do...." You can take some time just to absorb what has happened. And don't be surprised when you find yourself driving and have no idea why you are on the street you are on. Or find yourself putting your car keys in the fridge.
{{{hugs}}}
Anne
0 -
Dad and I spent 2 hours with the funeral director this afternoon. I'm bushed, but pleased with how it's coming together.
go to www.hansonrunsvold.com to see the details, service is Mar 25 Good Friday. Lew's photo and obituary have been posted.
I'm going to have a table where we'll spread out items that remind us of Lew: his Segway helmet & keys, a computer keyboard, binoculars, his Bird Watcher Watcher Fieldguide, etc. I'm also going to bring a basket of items he owned (watches, flashlights, headlights, leatherman, some of his gadgets and let each grandchild take an item to remember grandpa with. I'm going to set out our anniversary album, each page has a year's worth of photos of what was significant that year. 39 years in one album. I can only look at it in short spurts or it makes me cry but it's such a treasure. It was just a couple weeks ago that he printed out the photos for me for page 39.0 -
Puffin I hope you won't be offended but I wrote a poem for you and Lew:
Goodbye My Love
By me: Sharon
We walked together you and I, through good times and through bad
Through laughter, loss, and pain-sometimes happy, sometimes sad
We held each other without words, when being held was all it took
Sometimes just would stop a moment and share our special look
Now it's time to say goodbye, and go our separate ways
But never will we be apart, I will think of you always
Goodbye My Love
0 -
Puffin, good morning! I read the obituary you wrote for Lew.... and you did VERY well! So sorry you are having to go through this.... But every passing day will be a little easier... Just the thought of him falling off of the roof, and the after-math, is what hurts so much!
We only have each other for a little while.... every night I go to bed, and thank GOD for this day, and ask HIM for a million more tomorrow's for both of us....
Anne! That's right! I remember having to get MORE death certificates, for every dang thing Dad had anything to do with! And some WILL accept a copy, other's won't.
My folks had everything pretty much in order.... So I have all of our important papers in one note-book, inside plastic pages.... then kept in a metal cabinet in our closet.... I wrote down every phone number that has to be called... Especially SS.... to stop those checks before they send another one..... Also the girls are on our bank accounts, and we registered a Quit-Claim deed, so the house is in their name....
That way, they can either rent or sell, to help pay for our expenses if we have to be in some other "home".... And we paid for our Cremation...... I just want to be together, with the ashes of our little dog, when we kick the bucket.... That's what my Grandma always used to say...
I had to handle everything for her when she had to leave her home..... So the girls know where everything is.... I have it all written down.... That is of course except the cash Dear Husband has stashed God only knows where.... Somewhere upstairs, in his cubby-hole, under some boards inside a metal box, in between SOMEthing! I've explained this to my Daughter's, and told them just do an inch-by inch search of that little cubby-hole upstairs.....
See, if he TELLS me, then he will think I will maybe lose my mind, somehow, and post this information to the news-papers, and the world will come looking for his money.... and then TAKE it and we will starve to death.
I handle all the money stuff... I write all the checks, and keep track of things he accidentally throws away that we NEED. Like during tax season, and KEEPING those forms that come in that we NEED to keep, that are NOT "junk-mail".... Ha!
And Anne is right, about forgetting little things! You can put sticky-notes all over your house... Our little minds can't absorb all the important things all at once... like what has just happened to you...
So you just take care of yourself, and take it easy....
0 -
Oh Chevy you make me smile but I know exactly what you mean and you sound like such a smart girl.
0 -
0 -
The value of all service lies in the spirit in which you serve and
not in the importance or magnitude of the service. Even
the lowliest task or deed is made holy, joyous,
and prosperous when it is filled with love.
Charles Fillmore0
https://www.youtube.com/watch?v=owx3ao42kwI
