Can we have a forum for "older" people with bc?
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It is from numberless diverse acts of courage and belief that human
history is shaped.Each time a person stands up for an ideal or strikes
out against injustice, he or she sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy
and daring those ripples build a current which can sweep down
the mightiest walls of oppression and resistance.
Robert F. Kennedy
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Hi everyone
Sandra- what an awkwaRd position to be in. I, of course, don't know the dynamics of the people involved, but to have a situation within a family deteriorate to the point of not telling parents that their child has passed is pretty severe. Not taKing sides at all. Just sorry for any family that broken. My DIL hasn't spoken to her father since shortly after their wedding. The straw that broke the camel's back had to do (sort of)with her grandmother's death. Her sons fought over who would get her recipe book. These are men our ages and they couldn't find a solution? What about making copies of the book so everyone had access to it? At any rate, she hasn't spoken to him since then. Apparently he badly abused her mother, her and her two brothers. I could understand her not speaking to him because of that, but no, she had a distant relationship with him for many years, but the cookbook, which she didn't even want was the tipping point. My son has tried to explain to her that Frank is the only grandfather their girls will ever have. My husband died before Lu was born. He doesn't have a problem with her not wanting a relationship with him, but feels the girls should know their grandfather. He has suggested that they invite him to Charlotte, where he could stay in a motel. Then Rob would meet him at a park, or for lunch and his wife would not have to be involved. His concern is 2 things- one that the girls will never know a biological grandfather, but even more, if hey see that she has basically disowned her father, whats to stop them from disowning her when they get older?
Sorry I haven't been on much lately, but we have been busy getting the house ready for Tim's wedding (next Sat). And the big family dinner we are going to have here Fri night. And my brother is here. He came May 25th in order to be at the batchelor party on the 28th, and is staying until after the wedding. He has to go back for some medical issues, but we are having a great time. He has been out of work for over a year, so decided I needed a nice long visit. Honestly, I wish he could stay longer. We went to Vero beach one day to visit our 97 yr old Aunt, whom we all adore. She has no short term memory, but knew us immediately when we walked in. Couldn't remember where her "lovely" pink purse came from. (Her daughter had taken her to the mall one day and she picked it out). We went out for lunch at a beach restaurant and sat outside. The view was incredible. She kept asking my brother when she would see him again- I am very close with her daughter so I see her several times a year. He told her he was going to surprise her this coming Fri with his girlfriend, two of his children and his one granddaughter. She said that was wonderful, then asked again five minutes later. She also doesn't hear too well either,but if we seemed happy, so was she. I have never seen her unhappy except for the day of my Dad's funeral, which I totally understood. We had both lost our favorite person in the world.
More later
Anne
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Oops Anne...that was Puffin who posted about the family issues, not me. I've got enough on my plate without it.
Puffin, what a nightmare. Just going to a funeral so soon had to be very stressful for you. Then you had to be a watch dog. Glad it's over.
I wish I had some positive news to add to the group. We saw Mike's doctor Friday and got the preliminary results from the recent bone marrow biopsy. I knew it wasn't good when Mike's doctor, who always stands, pulled up a chair. Mike still has bone marrow cancer. The percentage of cancer in the marrow is exactly the same as it was a month before the transplant. The transplant didn't work. It wasn't a 100% failure because Mike's main problem with red blood cells seems to be fixed - at least so far, however the falling platelets at this stage of recover is indicative of bigger problems.The majority of the results won't be in until later this week, but it's likely to be more bad news in the doctor's opinion. Mike is crushed. He thought he was doing so good. He will be put back on chemo for a month, then with the second month, will get DLI...an infusion of T cells from the remaining frozen bone marrow stem cells. It's very dangerous but there is no choice. It could work but the chances aren't good. Still we are going to give it our best.
Last night we went to a restaurant with a group of friends to celebrate my friend's birthday. We haven't done this since before the transplant and hadn't thought he would be well enough to be out in public yet. Usually that's after day 100 and he's only at day 86 but his white cells, which fight infection, are nice and high so we went. No one had seen him since the end of February. They were, of course, surprised that his hair is gone and laughed at his sparse, fledgling mustache and goatee, but there was so much love and support in that room! Did my heart good too.
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Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us.
- Marianne Williamson -0 -
Sandra, I am so sorry to hear this news and I know that everyone here has high hopes for a miracle -- and they do happen. Sending light, healing energies and deeply felt hope.
Earlier Puffin -- I didn't know what to say. In some of my studying ( though many don't pay much attention to people who haven't a religious affiliation ) it has been said that only the strongest souls want to have Earth lives ( to grow their souls higher and quicker ) and so even though it seems like circumstances coming at you without let-up are very harsh, I have found that if I can find one positive thing to build on, it seems to start a process of looking and finding more that is positive. Takes some time -- not a quick process and sometimes not easy to 'see' any progress. I am hoping for you as well that your light and healing energies take over to carry you till you can do it totally on your own again.
Jackie
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Sorry Sandra- not surprised though-I can't keep my kids and grandkids names straight, so why should the names on this this thread? So sorry to hear Mike's treatment didn't do whAt you had hoped. Prayers and thoughts are with you both always.
Still in chaotic wedding preps. Actually, I am not part of the wedding plans at all- I am preparing for an influx of family, with a dinner here at my house Fri night.
Anne
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Sandra, Hugs and healing thoughts for you and Mike. Feel the love surrounding you.
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Sandra, what Wren said. Hope the chemo and T cells will put Mike into a nice long remission. At least he didn’t have to deal with GvH disease, where you have to choose between fighting infection and fighting rejection.
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Sandra, so very sorry about Mike's latest report.You and Mike have been on such an emotional roller coaster. I'm glad the two of you were able to enjoy an evening out with friends.
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I just got off the phone with Silver Sneakers, and I am LIVID! I have BCBS IL Medicare Supplement Plan F--the most expensive plan they offer. I tried to enroll in the Silver Sneakers program--a friend has the cheaper AARP Medicare Advantage and praises the program to the skies, since she gets free gym membership. I tried to enroll online, but they couldn’t find me or my insurance ID in their database, even though BCBS is listed as an eligible plan in the drop-down menu for IL. I called Silver Sneakers Customer Service, and they verified that my plan isn’t listed with them and that I should call my insurer’s Customer Service. So I did, went through a bazillion menus, only to be told they’re closed and I should call back “during normal business hours,” which aren’t listed on my card! It truly fries me that I’m paying through the nose for a Medicare supplement that won’t offer a fitness program (other than, presumably, telling me to go out and walk). I am going to have to pay even more to join a gym (not even the Y is free).
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Sandy - I pay for a medicare supplement too and I don't want to go on an HMO/Advantage plan. I have great docs that I've been using for 40 years and I don't want to change. Yes, the Advantage plans have free silver sneakers, but you then have to use only their docs & their hospitals/clinics. Not for me. We've found some great deals at the local YMCAs.
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Sandra - thinking about you & Mike today & sending best wishes for a positive turn. And hugs in the mean time.
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After an hour navigating various websites, holding for at least three customer service reps, and generally going around in circles. I finally was able to ascertain BCBS-IL has a Fitness Plan that for $25/mo (and no extended contracts) gives unlimited use of dozens of gyms not far from me (incl. the L.A. Fitness and--meh--Curves chains as well as the local JCC) as well as complementary practitioners such as massage therapists, acupuncturists & aromatherapists, yoga classes, etc. So I signed up. There’s an L.A. Fitness down the block and across B’way from me, but it’s small, has few amenities, hardly any parking, no pool, and isn’t well-maintained--it’s pretty much a frat-boy and pickup club. I chose instead as my “home gym” the Ravenswood branch--twice the size, clean, with a pool and large parking lot. But I can go to any gym in the network as often as I want.
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Life is the choice to follow the flow of energy within us.Death is the choice to block this flow of life energy.We are faced with this life or death choice every moment of our lives.When we choose not to follow our intuitive promptings, we close off our channel. We receive less energy, and our body begins to deteriorate.But as we follow our intuition, we open up, we receive more energy, and our body regenerates. - Shakti Gawain
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Morning and it is a really warm and beautiful here. Rain I don't think is a problem today. I hate to say it will/could come when I have things to do - like appts. to Podiatrist or my Mammograms later on the 13th. in a slight few days. Fortunately, for the podiatry appt. I was able through the new program for Vets to stay quite close to home ( within 20 miles ) and see a podiatrist that I saw yrs. ago and really liked. That happens on Thurs. and will be a relief. Due to the Taxotere my feet ( with some lingering neuropathy ) are not in very good shape. I ended up with a toenail fungus which is rather un-slightly and thick nails that are miss-sharpened. I've grown quite used to it all, but I find myself struggling constantly to keep up and manage the problem areas. I just can't contort myself very well anymore and get Charlie horses in the weirdest places and cause parts of my body to freeze up for probably only 30 secs. or so but it feels like forever -- so I gave up and asked for help from the V.A.
Hope you are all going to have a fantastic day. Thinking of all of you --- Linda, Mike & Sandra, Puffin and anyone having issues. Mine are easy to take care of, and so I want you to know that I'm hoping with all my heart that yours will get much better for you.
Jackie
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I was awakened suddenly this morning by the mother of all Charley-horses in my R calf--after stomping around the second floor and massaging my calf, I got it to calm down....only to be awakened again by one in my shin! (Could even see the muscles rippling). Frustrating that what used to cure them--grapefruit juice and a fistful of salted nuts--is now a no-no (the nuts are ok, but the grapefruit cancels out the letrozole).
Rather cool & breezy today--not even getting up to 70. Fine by me. Got my car serviced (new serpentine belt, oil change, tires rotated), my biopsy path report (pre-melanoma but all clean margins, so I just get the stitches out next week and follow up in 6 mos.), and an appt. tomorrow with my hand surgeon in Oak Lawn for a cortisone shot in my R trigger thumb so I can play Fri. night.
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ChiSandy, DH has leg cramps and takes about 3 tablespoons of vinegar in a glass of water. See if vinegar would be OK. He can't do grapefruit juice because he's on a statin.
And hooray for a good path report.
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What does the vinegar do to stop the cramps? I know the grapefruit juice normalizes potassium and the salted nuts sodium (depleted electrolytees, especially those and magnesium, can cause motor neurons that govern muscle flexion to fire out of control). With the vinegar, is it acid? Could it be, though, that different folks have different processes or reasons for the cramps? (Or would they subside anyway, and the time it takes to get to the kitchen and portion out and mix the vinegar & water is the real “cure?”).
I tend to be an extreme empiricist about medical stuff. Guess it’s a combo of having been (very briefly) pre-med, marrying a doctor, and spending my childhood watching “Mr. Wizard."
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ChiSandy ~ Sorry, late to this conversation, but are you/can you take Magnesium? I was having wicked cramps almost every night until I started Mag. Citrate 5 days ago. I've now had two nights cramp free. I can't attest to how long it will last but I'm happy just to have some better sleep!
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I think a lot of people beat up on themselves, punish themselves emotionally because they're "not good enough" or they haven't done enough.They berate themselves for not living up to their own or somebody else's expectations or for not having taken a different route in life or for not getting better grades in school or a better job . . . . Once you get into that state of mind, you continue to be mean to yourself and hurt yourself in ways you may not even be aware of.It's very important to be kind and loving to yourself.You're the only self you've got, so to speak.Befriend yourself in the same way you feel compassionate and gentle with other people.If you practice the principles of grieving, accepting, and forgiving yourself, you will be making a start in that direction. -Morrie Schwartz
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Tonic water - I keep the 6 oz bottles of diet tonic water (quinine) handy; they are effective in defeating those charley horses. Also bananas are a great supplement. Don't like vinegar unless I am using it for cooking and can't take grapefruit because of statin medication.
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Been taking Mg at bedtime for over a year now. I can't stand the taste of tonic water (reg. has too much sugar, and diet doesn't taste any better; and not only are bananas too high-carb for my diet, they've nauseated me since infancy (except when cooked in butter, brown sugar and rum, flambéed and served over vanilla ice cream). Nobody in our house drinks OJ--and it's also sugar-in-a-glass. I'm not potassium-deficient, since the diuretic in my blood pressure med is potassium-sparing. Maybe there's an OTC form of quinine supplement I can take at bedtime.
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Sandy - let me know if you find one. I had heard that quinine was no longer available in the US but I've never looked.
I drink 8 oz of tonic water almost every day and it doesn't help my calf or foot cramps. My mag & Potassium are both good on the blood tests.
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I have a friend who mentioned drinking tonic water at bedtime for the quinine. She said her doctor told her he couldn't prescribe it to her and suggested tonic. Sandy, I feel the same way about it as you do about tonic, although I do like it with gin and lime on a hot evening. :-)) All my blood tests were normal too but I thought I'd give additional mag a try. I've been taking 100mg of Mag Citrate twice a day and so far so good. Maybe that would help you, MinusTwo, since the tonic water isn't.
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I take 500mg of magnesium at night. Mag Citrate would make me go, go, go--it’s what my GI doc prescribes as a colonoscopy prep. I think I’ll go eat a Cara Cara navel orange--it might be a bit high in sugar, but at least it has lots of potassium and fiber (as long as I peel and eat it in sections). Forgot yesterday to grab a free orange from the snack counter at my Subaru dealer’s service waiting room. It was all I could do to ignore the free bagels & cream cheese and granola bars.
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I'm hoping that the Mag Citrate does double duty for me. For my leg cramps and constipation! That's why I chose that formulation of Mag. It's early yet and I can take more. I'd like to give it a chance to work. Funny you should mention your Subaru dealership, I'll be at mine tomorrow have the airbag recall done. Guess I won't have to worry about front seat passengers any more....like I've known there was a problem the 5 years I've owned it. Not. Nice of them to the replacement, however. Hm. I wonder if they'll have bagels and cream cheese?
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Whoa--airbag recall? My service tech checked the computer and found no outstanding recall notices for my 2014 Outback (maybe it doesn’t have Takata brand airbags), though there was a “silent recall” for serpentine belts whose coating melted over time and caused squeaking and chirping--so they replaced mine with an updated belt.
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But judgment may heal over time.One of the blessings of growing older is the discovery that many of the things I once believed to be my shortcomings have turned out in the long run to be my strengths, and other things of which I was unduly proud have revealed themselves in the end to be among my shortcomings.Things that I have hidden from others for years turn out to be the anchor and enrichment of my middle age.What a blessing it is to outlive your self-judgments and harvest your failures. - Rachel Naomi Remen
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Hi everyone
Sorry I haven't been posting. Between having my brother here and getting the house ready for the dinner here Fri night, and the wedding on Sat, I am beyond exhausted. I was very surprised to find out that my brother has quite a good eye for decorating. He has helped tremendously in adding little tweaks to the family room that really freshened it up. I will be sorry to see him go next week, but at least until he gets a job, I think I will see him more often. He lost his job over a year ago, and at 60, places just don't want to pay him the big bucks. He is currently living with with his oldest son, daughter-in-law and 5 year old grandaughter. It is working, but not real comfortably. Our situations are very different. He hasn't lived with this son in at least 15 years. His second son lived with him for a while, but it was his home. The older son is urging him to stay here longer and I am definitely in agreement. His personality is very calm, as is mine and we have spent our days shopping, going out to lunch, or just sitting here, talking sporadically.
Going to take advantage of the fact that no one else is home and sneak in a nap. Hope everyone is doing well, especially Sandra, Mike and Puffin.
Anne
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An excellent way to change the flavor of diet tonic is to mix it with a red wine. It makes it light and bubbly and an excuse to enjoy that last glass over ice.
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