Can we have a forum for "older" people with bc?
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Sandy !!!!!0 -
Sandy, such great news. Such feelings of relief when you hear those words!
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Glad you are doing the happy dance!
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Congratulations! We are in about the same boat. How are you handling the Femara
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May have found the answer to DH recent problems. They told me he may have a tick borne infection, though we never noticed a tick on him. The deer ticks here are abundant this year! He tested neg for Lyme , but I found one called anaplasmosis, with many of his symptoms. Just spoke to the nurse , who tells me they have seen several cases of this , this spring, so I may be right. The antibiotic is doing the trick! Hope he gets out soon!
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What great news Bonnet. Hopefully this big frustration will be over sooner rather than later and life can go on w/o scary aggravations.
Jackie
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Bonnets, what a scare you've had with DH! It's it amazing that it could all be the result of a tiny tick. They are such potent tiny things. We used to live in the Colorado mountains and had a hard time with ticks, especially when my son was very young and was always out playing in bushes etc. So glad your own research paid off and you found the info, and glad the antibiotics are working.
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Most people are searching for happiness. They're looking for it. They're trying to find it in someone or something outside of themselves.That's a fundamental mistake. Happiness is something that you are, and it comes from the way you think. -Wayne Dyer
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Bonnets, good news! It's so frightening when you can't figure out why something has happened. Years ago when we moved back to the states from Europe, my son was only 18 month old. Within 2 weeks he acquired some kind of infection - disease - ??? - that started us on a 9 month nightmare of hospitalizations, procedures, medicine, tests and worry. He had the "target" on the back of his neck that moved further away down to his shoulders before going away. He developed burn-like urticaria all over his body for a few hours at a time. The infectious disease docs tried, but couldn't come up with a reason. (Lyme and juvenile arthritis were ruled out.) On one of the hospitalizations, they installed a secret camera to check me in case I was harming him somehow (Munchhausen's Syndrome) since they were out of ideas. This was 1984-85. Hopefully progress has been made in this area in thirty years! Ryan's brain was inflamed, he saw and heard things, had wild panic attacks, lost so much weight he was covered in bruises from all his bones sticking through, and developed a life-long fear of doctors. Poor little guy finally had enough of people smiling at him and then hurting him. He developed a kind of split personality and his right arm where his IV's were didn't belong to him anymore. It just dangled there. He could no longer see it or feel anything. It took several months with a child psychologist to fix that. Finally it went away. Still don't know if the latest treatment (one of many that were tried) helped or the disease just ran its course. Ryan has had mental issues ever since. He's 31 now.
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The happiness which brings enduring worth to life is not
the superficial happiness that is dependent on circumstances.
It is the happiness and contentment that fills the soul even
in the midst of the most distressing circumstances and the
most bitter environment. It is the kind of happiness that grins
when things go wrong and smiles through the tears. The happiness
for which our souls ache is one undisturbed by success or failure,
one which will root deeply inside us and give inward relaxation,
peace, and contentment, no matter what the surface problems may be.
That kind of happiness stands in need of no outward stimulus.
Billy Graham0 -
Wow Sandra, can't imagine anything scarier. Nine months with no answers with an 18 mo old. I think I might hAve lost my mind. There is absolutely nothing worse than seeing your child hurting and being totally helpless to help him. I am not minimizing how tough things are with Mike right now, but at least he can tell you what he needs or wants. Babies can't.
I had an interesting day yesterday. It was supposed to be my first full day of rest since my brother arrived May 25th. I straightened the house up - day before I had 6 kids playing with play dough in my family room and the two babies, with their moms. So yesterday, like I said, I did some straightening up, then ran to the store for a few items, nothing major. I came home, put everything away, made my smoothie, and sat down to read all by myself for the rest of the afternoon. I swear I wasn't sitting for 10minutes when my DIL, the one that had the baby a week ago, calls and asks if I can take her to the Dr- she has a fever of almost 104. Of course I left immediately, but her Moms house is a good 20 minutes from here. By the time I got there, the Dr had changed her mind and wanted Anna to go to the ER. She said they get answers quicker than she could, and since it was the same hospital that she had Julianna in, they already had all of her info. I left there at 7:15, my son got there about 5:30.
The Dr diagnosed her with a minor urinary infection, which he said was very common right after giving birth, because the baby was sitting on the bladder the whole 9 mos, and a slight case of mastitis, which is a result of breast feeding. He ordered two bags of IV fluid with antibiotics and a few minutes later said she could go home. Rob had left to get something to eat, and Anna called him to tell himshe was getting released. He rushed back, leaving his untouched meal in his car, only to find out she had just started the second bag of IV fluid. She fell asleep and I left there at 7:15. The Dr said she can continue breast feeding, but need to pump out any "leftover" milk at every feeding.
I am so upset with them. They have no relationship with each other at all except for the children. She is a VERY needy person, but a person who needs total control. He is an easy going guy most of the time, but he has gotten so tired of her treating him like a little child, and ignoring or correcting every word he says and every move he makes, that he has totally shut down with her. I had to tell him, when she was in labor, before the epidural, to hold her hand. So that's what he did, he held her hand. Didn't say one word, or stroke her hair, just stood here holding her hand. And after he epidural, he went over and sat on the couch in the room, not moving again till the actual birth, and I'm not sure he would have moved then, except he doctor called him over. It is so hard to watch. I have suggested counseling to him many times and he says he has asked her to pick a counselor and make an appt. He says if he sets it up, she will believe he has already convinced the Dr that it's all her fault. I mentioned it to her after the driving fiasco, and she said she has tried to get him to agree to go and he refuses. God help those little girls. At least for he month she is here in the summer, the girls are surrounded by family love, but home in So Carolina, they have no one.
Off to another day. Hope everyone is doing okay and has an uneventful calm weekend- or at least, if there are events, that they are chosen, enjoyable ones
Anne
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Pontiac, aren't family interesting... can't live with them, can't live without them. I can empathize with your situation. My daughter has 3 children, the middle 5 yr old, they adopted from Ethiopia when he was barely a year old. He had major malnutrition, health issues, etc from being in a state orphanage there and consequently is almost deaf, has been diagnosed with autism, defiance disorder, ADD, apraxia of speech, and numerous other issues. Her husband is a fire captain and is gone the majority of the time and has a difficult time dealing with the disabilities and also their youngest child who is only 22 months. I keep hoping they will get counseling, but it really has to be an individual decision. Hard to see children (even adult ones) struggling with relationships or any of life's challenges. I hope you finally get some of that alone time with piece and quiet and get to go back to the book! Hang in there.
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Hey guys thought I would check in. DH and I just got back from our trip to alaska. We had a wonderful time. DH is doing a lot better health wise and so am I. Yogu seems to be helping me along with my swimming. Armedix giving me a little bone issues but enjoying life. Wishing the best to all. Shuf
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Shuf, good to see you. Sounds like it was a great trip. Good to hear that your health is better with the yoga and swimming. How much longer do you have on the Arimidex and I also have forgotten whether it is Arimidex or the generic. Thinking out loud here that changing from one to the other could solve the bone issues. Then again, you could end up with some other se too. I ultimately ( on generic Anastrozole ) didn't recognize any se's until about three or four months before my five yrs. was up. I had noticed how quick to anger I was ( thank goodness it waited until I was almost done ) but that seemed to be the only lasting se that I got from the Anastrozole.
Jackie
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Hi, just checking in and happy to see so many posts.
Sandra, I think of you often and am sorry to hear that the news is not better for Mike. I am glad you got out to dinner. It has been a long haul for you and your family.
Anne, you have had a very busy few months (as always!). I know what you mean about having your brother around. I reconnected with my oldest brother in Ohio last year and can't wait to see him again. He was always a good friend to me even though he was 7 years older.
As for your DIL, I have another friend I met on BCO whose DIL is so controlling and, as you described, "helpless" at the same time.
There was / is drama whenever the DIL is around, and she has tried to alienate the grandparents who live many hours away. They finally have had their best visits when their son brings the girls alone.
As far as the breastfeeding, there are women the world over who breastfeed on very diverse diets. I ran groups for new mothers for over 20 years. It takes fluids and fats too to make milk. I have vegan friends and they do not withhold meat from their toddlers while growing. It must be hard to watch. If baby is still not gaining, she should see a lactation consultant to be sure the baby is positioned properly. As far as pumping out after each feeding, is that so the body will make more milk? It just doesn't sound like things are faling into place yet. Your family is fortunate to have you always there for them. I hope things work out OK.Jean/Bonnets, I hope you find the answer to DH's illness very soon. It has gone on too long.
Carole, I can't even imagine how difficult it is to deal with people who do not have self-respect and consideration for the place they are staying. The very people who do not want to pay will be the ones who complain when things are not perfect. I hope you can take some of this in stride and recognize people for who they are. I hope you are spared these storms I see on the weather channel.
Dara, welcome. I had a lumpectomy almost 5 years ago. I do not have genetic issues as far as I know. At our age, it does not seem to be as likely that genetics would be playing a part. I took ownership of my records and diagnosis etc....when I first had the biopsy, I began making surgeon appointments. I picked up my glass slides and complete biopsy report They were sealed and I dropped them off at various hospitals to speed up the process. I learned a lot from reading the reports and going online.
I wish you all the best in your journey toward staying cancer free.Jackie, once again, thanks for all your quotes and your faithfulness.
More soon....please take care everyone.
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I am in harmony with God's beautiful world. A summer bouquet may include an
assortment of flowers in a rainbow of colors. The variety makes the whole bouquet
even more beautiful. I realize I am one flower in the wondrous bouquet of humanity.
Without judging or comparing myself to others, I enjoy the unique beauty in all of us.
I am a divine expression of God and so is everyone else. As I value our commonalities
and our differences, I experience harmony. I relax into knowing that I am loved and
that I have a unique contribution to make. As I learn to love myself, I am at peace--
with myself and others. Living in peace, I am in harmony with God's beautiful world.
unattributed0 -
Good morning,
Hoping for if not cooler, at least less humid weather today. Yesterday was not too bad if you weren't to excessive with anything while you are outside. I dusted my car off this morning --- still came in dripping, but would be much worse if I waited. I still find lots of joy in driving and caring for this car --- though I resisted so long about buying it. And, as you know, before the fact I was totally convinced an Equinox ( Chevy ) was totally the WRONG car for me because I so disliked them when they first came out. Well, that is a lesson to me --- sometimes you DO let ideas solidify and this comes ( hanging my head now ) from someone who is always happy to say how FLEXIBLE I am. I had almost no flexibility about this Equinox and only DROVE it to more or less let the salesman feel he was doing his job well. Turns out as they say !!!!! A couple of things I don't like, but that would be true of anything and any car. Overall, sometimes I just sit and think --- I would have missed it had not that salesman continued to encourage that test drive.
Joan, it is so good to hear from you. We have gone a bit quiet here with the summer upon us I think. So much to do and I think a lot of people are under-going some un-pleasant weather ( whatever extreme ) like our heat and humidity.
I think of everyone here and hope all are doing ok. Anne, I watched a short piece on two families that "live off the grid" this a.m. Interesting. The one family ( husband and wife ) were living in a million dollar home. Had geo-thermal type heating and cooling etc. But, they were on the top of a small mountain and completely neighbor-less. Turns out they are selling their home now as grandkids have come along and the reasons they originally ( peace, quiet, beauty ) chose their style have paled considerably enough that they choose to re-enter the rat-race so to speak. The price for the home is $1,000,000. Well, that leaves me out. The other couple, not selling, had one of those tiny homes that was working for them.
I just don't think I could do it --- I think I'd need an extra tiny home attached to the first for things like closet space, other storage, and any other amenity that just might not ordinarily fit otherwise -- like an almost full size bathroom. I have heard that the tiny homes can also get up into fancy prices as well, but I do feel in some instances that it is not a totally bad idea. Just not something I think I could easily do. After all --- most apartments are bigger.
Anyway, hope you all have a truly wonderful Saturday.
I'm going to work as usual a bit later. I think the plan was to have my patient go home on Monday, but I'm wondering. She has developed a cough and blood tests taken for everything and the kitchen sink so we will see. Should she go home --- not sure how my schedule will be. Movement, agility, walking etc. with care have all been achieved, but with a certain amt. of shakiness not there previously so much more help may be required. So, that I think may be one of those 'determined' later items.
Jackie
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Hi everyone
Joan-I am not opposed to a vegan diet, although I do love hamburgers and steak once in a while. My DIL is obsessed with her diet. She eats no fats whatsoever, and comes close to a heart attaCk if one sneaks by her. One Thankdgiving before they had children or moved to So Carolina, They came here for dinner. I use the Pepperidge FaRms stuffing. I read the ingredients very carefully, then kept a serving on the side that did not go anywhere near the turkey. I told her it was vegan acceptable, so she ate it and loved it. A few days later, she bought some stovetop stuffing and was appalled and physically ill that I had tricked her. I didn't and wouldn't even think of doing that. It took till the next year when I bought what I hAd used and saved the bag to show her before she believed it.
I am more concerned with the unhealthy and poor meals she chooses to make. Too many times I have seen her cook plain pasta and add a veggie and that's the dinner for her and her three year old. I have found so many vegan recipes on line that are simple, but different and have lots of veggies in them. Then last weekend, I went to Whole Foods and they have a great variety of canned soups and other stuff that is vegan acceptable. I think they are great for quick lunches, and then cook something for dinner. Usually, the recipes make more than 2 servings- so freeze the leftovers and have them one night when you don't want to cook.
Their 3 yr old was way behind on the growTh charts, even the ones for breastfed babies, and the Dr told her to start giving Lucia peanut butter for the oil in it. The newborn lost a full pound after birth. Both girls had trouble latching on, and Lu was fed breast milk from a bottle for 18 months. Alexandria is latching on a bit better now, and personally, I feel it is because Anna is so afraid it won't work that she tenses up every time she tries. I also know Anna does not eat enough daily to be breastfeeding and nourishing herself. My other daughter is also breastfeeding, and she eats everything in sight.
I am a little concerned aT the babies having such a lmited diet. I read somewhere that vegan children are at danger as they get older because their bodies can't process some of the hormones the body produces in the adult body. I don't know if that is true. I don't like the fact that every time Lu wants to taste something Daddy is eating, Mommy says its yucky. I don't think that's fair to Daddy. And t
hey both say the girls will be able to chose whether they want to be vegan or not, but not before she tells them how animals are killed and tortured to become food. When 99% of the people in this country eat meat, I think that prejudices them against society at a very young age. Anna will not eat anything that has any sugar, or anything else she feels is not healthy. I applaud her for that, but then she takes it too far from there and won't eat anything that has been stirred with the same spoon as chicken, or meat or fat. We cannot give Lu a taste of our vegetable unless we can guarantee that it had not touched our meat, or our forks.
Finally it is not to make more milk that the Dr wants her to pump, it is because she has developed a mild case of mastitis and the Dr said the only way to avoid that is to make sure you empty both breasts after each feeding.
More later....
anne
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Anne, I think she would qualify as having an eating disorder. Being that focused on every bite is not normal. Perhaps she could be persuaded to see a naturopathic nutritionist who would be sympathetic to her wishes, but make sure the kids are getting enough protein. My son spent his childhood about to go off the growth charts completely; always in the bottom 5% for height and weight. He ate everything in sight, but burned it off with high energy. I used to feel like I was stoking a coal fired locomotive. The more I shoveled into him the faster he went.
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Anne, I'm with Wren on this--bizarre eating patterns, especially shunning essential nutrients such as protein and fat without a doctor's orders, are a form of anorexia. She is also committing child abuse.
It was pretty darn hot out today--high 80s by the lake, and when I got to Bartlett (aka the Land Beyond O’Hare) to play my outdoor festival concert, it was 96. Fortunately, the stage was tented, which cooled things off considerably and let me wear compression without discomfort. Unfortunately, my cataracts have gotten to the point where no matter which glasses--sun or photochromic--I was wearing, the backlit effect of the sunshine offstage and the lack of a spotlight onstage made it difficult to impossible for me to tell where on my guitar neck the fret marker dots were--all I could see was the stripe along the side of the fretboard and some frets. No problem for the “three-chords-and-the-truth” songs, but the ones with complex fingering and chords up & down the neck were a real challenge, and I overshot the frets a couple of times. Went through two bottles of water. By the time I got back into the car, I had to crank up the A/C all the way, and for the first few miles I drove with my elbows straight out so the vents would blow cold air on my armpits!
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Hi, I tried to respond on my private message but it did not go through. I am 65, Stage IA, had a lumpectomy in 5/16 (all clear margins and no lymph node spread), oncotype 28 (high range of intermediate- grey area), Brac - no history of cancer in family or genetically, Grade 2 , size of tumor (2 cm). I want to turn down chemo and only do radiation and a hormone drug as for me, there are only single digit benefits and no guarantee that it will work. But, I am grappling with " why am I not trying every avenue of help including chemo as this is only a one shot deal? Any words of advice? I know you also mentioned a pre-survey? What does that mean
Please keep in touch.
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Teka, I love your note to self. It's so appropriate and reassuring to all going on with bc. Thanks for your info also. I'm still awaiting my oncotype score and am researching the various recommendations.
newbcny, have your read the article on this site about scores 0-11? I know your score is marginal, but this article might give a little more insight into why chemo might be recommended. http://www.breastcancer.org/research-news/oncotype-score-0-to-10-can-skip-chemo. Good luck! The women on this site have helped me so much.
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Mindfulness of oneself cultivates wisdom.
Mindfulness of others cultivates compassion.
Stonepeace0 -
The situation continues to get worse with Mike. His platelets are down to 28, his white blood cells are down to 1.4, and now his hemoglobin is falling. All his counts were in the normal range in May. The relapsed MDS is really progressing quickly and I'm afraid it will turn to Accute Myeloid Leukemia soon. It's diagnosed by a percentage of certain cells in his bone marrow. He was not too close a couple of weeks ago when he had the last bone marrow biopsy, but MDS moves fast once it gets the upper hand. Friday's regular lab tests showed he is neutropenic again. Infection fighting neutrophils are below 1,000 so he's back in quarantine. We'll be going to the hospital again Monday morning. At this point, I don't know how many days he will be required to go this week. Probably depends on tomorrow's lab test results and whether his platelets have fallen enough for him to get some via IV.
Our brother in law (Brian is married to Mike's sister Lisa, his bone marrow donor) has been diagnosed with two malignant state 4 brain tumors. He's not even 50 yet!! He will have surgery Thursday. There is little hope. Poor Lisa is just in shock. They may try for a 2nd opinion at Mayo. Couldn't hurt.
Wish I had some good news. It's been in short supply lately.
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Sandra, So sorry to hear the news on Mike. Praying for you both, that things will take a turn for the better again. It is said, we never get more than we can bear, but that can be difficult to accept! May you find peace in all of this.
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Sandra, I so very very sorry to hear of all these issues you're dealing with. Life certainly doesn't seem fair at times, and it seems that some people get more than their fair share of heartache. We're all sending good thoughts and prayers to you and all your family.
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Two things awe me most, the starry sky above me and the moral law within me.
Immanuel Kant0 -
Sandra, your news is distressing. We often have at times only hope to carry us forward. I'm reminded of this quote: " The will of God will never take you where the grace of God won't protest you ". You have walked for miles and miles and just kept going. Many here are with you hoping and praying for you and for Mike's brothers wife Lisa. Life seems so unfair at times, but we have to keep moving forward doing the best we know how.
Jackie
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SAndra- I am so sorry to hear that Mike isn't doing well. My cousin, whose husband was recently diagnosed with amlyadosis (a type of cancer I think) said it best when she said to me, " it is heartbreaking to watch a strong, independent man change into a weak, helpless invalid" and I agree with her totally. With your husband and hers, the change came pretty quickly, over a matter of months. I watched my husband decline year after year, in total denial, when he could have made some changes to increase at least his quality of life for many of those years, until there was just a shell left, most of the time with no energy to enjoy even simple pleasures, like having family over for dinner. Prayers, hugs and love for you both.
Also, just wanted to mention that my son, whose wife treats him like an idiot most of the time, had his school, Rock Hill High, dedicate this years yearbook to him. He has only been there 4-5 years, he teaches the lowest level students they haVe, yet has made an impact on so many students and staff, that they honored him with the yearbook dedication. The accolades from 3 students and one co-worker were amazing. But his wife had to question him about why he chose the cup he did out of the cabinet to get a drink of water. Go figure!
My two newest - Alexandria (Almost 4 mos) and Julianna(2wks)
6 of the 8 the morning of the wedding
- Anne
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