Catholics
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Sweet Sisters,
We leave today for NY. I see both Dr. Ashikari and Dr. Salzberg tomorrow at 11:00 and surgery is scheduled for Friday at 1:00 unless something changes. I have spent the last few days getting all the pre-op done, acquiring records and film, and all that kind of thing.
I had a shock yesterday. I first saw and read some of the mammy, MRI, US impressions from the radiologists. I now have found I have "something" in the right breast as well - 2 things actually - but no one seems to think this is very important... Again, "probably not cancer..." The area in the left breast is apparently getting worse but no one has yet said what it is... I am furious for this was known to the docs more than 18 months ago. They decided to just call me in more frequently and "watch it." Well, enough of just watching it. The plane leaves today.
The BS called me yesterday and I liked him - on the phone, but he told me I am one year older than when genetic BC is most likely to strike people. I asked him if the Cancer Police had sent an email to notify my breasts of this fact. He laughed and said probably not! So he has a sense of humor. He is concerned about other health problems I have and I am glad he has paid attention to this fact rather than ignore it. So, we will have to wait and see what he says on Wednesday. Yes, he does perform PMX on "older" women but wants me to be aware there are additional risks. I personally think cancer is a worse risk.
Please keep me in your prayers for I am still pretty much at peace but do not feel quite as peaceful as I did a few days ago. I hate to fly so maybe this is it.
I will let everyone know what the docs say on Wednesday and Jerry will let everyone know how surgery goes.
Love to all you brave, beautiful, and loving sisters. May God bless each of you.
Hugs
Sandy
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sandy will be saying prayers for you!!!! hugs!
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Sandy, my prayers are with you. positive vibes, Betty
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we are with you sandy!! xo
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Sandy - safe trip & God bless! Hope it goes well today meeting the docs on Wed & will say prayers for completely successful surgery on Friday.
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God bless you Sandy!! You are in my prayers!
Rennasus et al, the last time I was in to see my onc and she went over my cancer family tree, she strongly suggested I see a genetic counselor to try to pin down if there is a gene other than BRCA. Apparently there are other trouble makers in us. My appt is Tuesday and my sister agreed to go with me. I just want to make sure my insurance covers this.
Sheila - wow, you *are* a fountain of knowledge! I read the symptoms of hemochromatosis and it sounds like me! Except for the skin discoloration. I'm a pale white girl. But my iron has been good - post chemo. I'm wondering if I'm taking too much Vit D (5000IU) and it's causing gastro issues. But honestly, before cancer, I had gastro issues, so to not have them now would be odd.
Yes, prayers for the Japanese and yes, time to be thankful for the gifts we have. The flowers popping up. Spring in the air. Food in our bellies. Angels at our sides.
Speaking of angels. I signed up to be a cancer mentor on Imerman Angels. I'm not sure what I've gotten myself into (LOL) but a counselor called me last night and they're putting me in the database and will match me up with someone looking for a fellow cancer patient ... kind of like what we do here... support each other. No medical advice, just a sharing. I told her that I posted a lot here and she said that was good. So we'll see what happens.
Of your kindness, Lord, dispel the darkness of this night, so that we your servants may go to sleep in peace and wake to the light of the new day, rejoicing in your name.
Through Christ our Lord, Amen.May the almighty Lord grant us a quiet night and a perfect end. AMEN
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Prayers for you Sandy. And sending all good thoughts and wishes your way for a successful surgery and speedy recovery. God Bless.
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Sandy my prayers are with you too, and all the decisions you have to make. Let your surgeons be quided to give you the best care and info to help with your decisions. PMX----prohylactic mastectomy ? Sorry for the late question because you will be to busy to respond.
Theresa, glad you looked at hemachromatosis. The color of the skin you're likely referring to is when the disease causes cirrhrosis with later stage jaundice. That's what so nasty about the disease alot of the damage can be done and go undx'd until late. The dementia and cardiomyopathy are late manifestations. When I suggested iron panel--it's not just iron it includes -TIBC, iron saturation, ferrittin, and iron. Think that's it. Without all of them it's not a complete picture.
The ideal is that we could be tested for all the known genetic things without breaking the bank. When the government allowed gene patenting is when it became so costly. Different companies around the country patented these thing and even though the american taxpayer payed for the research , we get stuck with the bill a second time with testing.
Squid-- you sound better . Is that toe tapping going to be done with the side that had the injection? The story about the baby I hadn't heard yet. --special
Betty Is the redness all gone?
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Question for our NURSES! Should we be getting shingles vaccine? I didn't even know there was one.
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JV I tried before my first surgery. Wasn't approved and they couldn't get it in time. No vacinnes so many weeks before surgery and in particular chemo. If you have time make sure you get the pneumona vax, hepatitis a --2 shots six months+ apart--but you could get the first shot.
I met a lot of resistance on getting the shingles shot ,even though the literature supported it. I felt like I was hitting a brick wall & still don't know why? No vaccines should be taken while immune status affected.
You could ask for a chikenpox TITER. blood test to let you know immune status to cp. Can't get shingles unless you have had cp. L&H sheila
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Dear Sweet Sisters,
Thank ALL of you for your well wishes and for continuing to remember me in your prayers! You can't imagine how much it lightens my heart to get on this site and see so many of you sending well wishes, prayers, and hugs my way. I feel them and they are calming.
Jerry and I met with Dr. Ashilkari this morning and we both loved him. He is down to earth, patient, kind, and dodges no questions. Rather, he gives info, provides stats, and shows pictures of successes and of the worst case outcome he has had. I didn't like the photo, but thought he was being very honest to show it to me.
I met with Anesthelogy today and really liked the doc I will have. He went over everything and I feel I have been placed in good hands with him as well.
I see the PS tomorrow and hope this will also go fine and believe it will. I have already talked to him and loved him - on the phone.
My biggest problem now, and it is driving me nuts, are my adult children, Camille and Martin. They both feel this not necessary and think I have lost my mind.They believe my risk of developing BS is less than 25% and think I should just be watched closely. I am unable to make them understand if my risk is only 25%, this is a risk I don't want to take when I can lower my risk to less than 2-3%. I know they are worried about mom and want everything to be perfect and apparently think I have just lost my mind...
If anyone has suggestions on how to handle grown children, please let me know for I am at my wit's end with the two of them. I am more worried about them than about the surgery.
Praise be to God for our flight was late but a fairly smooth one with our luggage also ariving. Praise be to God for helping me find the right BS. Praise be to God for my husband for I couldn't do this without him. Praise be to God for all of you, my dear Sweet Sisters, for you are walking with me. Praise be to God for my chiidren who love me even though they are being a pain right now.
I will let everyone know tomorrow how the appointment with the PS goes and update you on times etc. One other thing of note, I asked Dr. Ashikari whet he would recommend if I were his Mother, and had not been tested for BRACA1/2 but had same family history. Response, " I would do everything I could to persuade her to get this PMX." His eyes told me he was telling the truth.
Love, Hugs, and may God Bless Each of You!
Sandy
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Sandy I am so glad that you liked the surgeons Amen to that.
I am sure your kids are just scared for you, but I believe and this is only my opinion, but as adults they should try to understand that you have to make the decision that is best for you, just like you may not agree with every decision they make , it has to be respected. All input is great, but ultimatley a decision like this for us is very personal and unique, one which WE have to live with so I think it should be respected as such. Maybe just reassure them that you are very at peace with your decision and you would love for them to be at peace with it as well... God bless you all.. I hope I didnt say anything that seems insensitive to your children I truly do not mean it that way... I wish you only the best
Love Maria
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Sandy - I agree with Tink... these breast cancer issues are very personal to each one of us and the most important decision is yours and it sounds like you have your husband's support. Maybe he can talk to them and be firm about it... let them know that their behavior is upsetting you. I decided to have a lumpetomy. My sister said if she got cancer, she'd get rid of both of her breasts. I'm not unhappy with my decision and wouldn't tell my sister that she would be crazy to get the bilateral.. It is what it is. We are all different.
Soooo.... I was in the ER all afternoon with Skip. I was working from home this morning b/c he had a playground to inspect locally... when were then going to drive into work for a half day in the city. He calls me about noon with hesitant and confused speech. He said he got the starburst in his right eye like he used to get when he used to get migraines. 25 years ago, he was cured of migraines by a healing priest.... never had another one until today. I thought he might be having a stroke, so I called my daughter (who was closer to where he was) to go get him. She called her husband who was even closer. They are both EMTs. Travis did the "tests" for stroke and he was ok and Skip refused to go to the ER. I was driving toward Winchester to meet them at the ER and they were coming home ... we met halfway and I told Skip (via phone) that I was taking him to the ER. He wasn't happy with me, but didn't resist. We both pulled over and I took him the rest of the way. After the doctor finally saw him, they gave him an IV of anti-nausea meds and a migraine med. Five minutes later, he starts acting agitated and restless. The nurse walked in and I told her that I was about to ring for her... The doctor came back in and said sometime people have that reaction to the anti-nausea med so she countered it with Benadryl. She also had him get an MRI of the brain. The benadryl calmed him only a little by the time they rolled him to the MRI. I went down to the cafeteria to get a bite to eat and wasn't back up in the room for long before they wheeled him back. He said, "I was bad". He apparently hadn't calmed down enough and the MRI was freaking him out. But they got enough images that the doctor looked at it and said it wasn't a stroke. But she wants him to see a neurologist. He's out like a light now. What a day!
It's always something.
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Jv reconsidered my response on vaccines----My twin had Bc in 96, I had Mri evidence in 08, but not officially dx'd until Jan 09. Sister twin had never received the Pneumovax and of late years kept experiencing problems. She has as one doc described the most severe case of lymph edema they had ever seen. It involves her right arm and her trunk to the mid-line front and back. Within the last 2 years I got her to talk to her docs about pneumovax---outcome was , she got it.
The key here is involve your onc, infectious disease doc , county health doc. It will take many phone calls and pleadings to get an answer.
I figured I would get the chickenpox vaccine and it would help protect against the shingles. I couldn't document hx of cp which is herpes varicella, once contracted is lives in the neurons. It can be reactivated at a given point at an older age as shingles. It then is known as herpes zoster. Why is beyond my memory and maybe medical science not sure which. ---------Where I shot myself in the foot, was they have been developing and it looks like it is approved is a vaccine against whopping cough. Well after I took the CP vax it was said you couldn't receive the whooping cough vaccine. That time has passed perhaps. The bottom line is the perfect person to ask is--an oncologist that has certifications in infectious disease and immunization. Now that may seem crazy, but medical knowledge is so splintered because there is sooooo much to know.
All specialities depend on each other, the problem of the splintering is they don't have the knowledge of the other specialities. Hence all the referrals. Perhaps contacting the Center for Disease control with the Question ? It would seem that talking with the local infectious disease doc would work. It doesn't. Immunization is highly sophisticated------that's why you can find articles, but no answers by absolute consensus i.e.--do this.By the the time it becomes do this policy, it's years.
The pneunmovax protects against 23 types of bacteria. Anecdotal observation which means my own observation and not based on doulble blind clincal studies . Is I have had no sinus infections of note. Sinus infections can either becaused by viruses or bacteria. I used to get bacterial sinus infections alot. Not since pneumovax---is there a connection---welll it's a vax against bacteria. Bacteria can decide where it wants to take up housekeeping. ERGO my conclusion has been if it is a bacteria that was included in the pneumovax ---I'm protected elswhere i.e sinuses.
For those that say I had the pneumovax and I still got pneumonia. We really need PNEUMO 2. In the first vax they hit the biggies. Doesn't mean there are only 23. If it is a bacteria you are not protected against, you are a receptive host, a bug will move in and take up housekeeping.
I would do what I'm going to do now by PM because it's kind of gross. But any ENT doc will teach you about saline irrigation of the nose.You can google the whole description. My variation on it is to use simple tap water --snort and blow it out. Why? The small amout of chlorine and I'm only doing in the forenose over the sink. Actually, anyone wanting a science project for there kid with access to a lab--this would be great. Frankly , I would like big science people to take it on. AND then do a year long study on the reduced infections within a hospital
MICHELLE
Gear change-------Japanese people are going to take several years getting over this. What if we could take some in. I have room for perhaps four. An adult or two and several childern. So what do I do, who do I contact. MICHELLE maybe your foundation could look in to matching folks. Maybe this is part of your calling? Perhaps this was part of my own revealtion of need for choas. ----Joke I finaly got the garage cleaned out----if your not from florida ---you won't get that one. But I could within days be ready to receive. We would just have to get by the State Department. Immigration, Homeland security, National security. Anybody ready to take them on. Course, I just put us on there radar because I typed there names. I will defer to Michelle, until further notified.
Namaste-sheila
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Sandy - ditto what Maria said. And, I'll bet they turn around and support you all the way now that they know this is your final decision. They may have just been challenging you to be sure.
Good grief Theresa! What a scare. So glad it wasn't a stroke! Wonder what triggered it after all this time?
Sheila - thanks for info on shingles vaccine. I had a pneumonia one - think that lasts 5 years or so. But I know from my dad's experience how painful shingles can be. Will ask about it next dr. apptmt. And, yes, I've had chicken pox - measles too. I remember them clearly.
Prayers for Sandy & Skip/Theresa tonite.
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Sheila - I must have been typing while you were! Yes I've used those neti pots. Have also had to have sinuses irrigated twice by ENT which is NO fun whatsoever. So I know now to call when it first starts. Mine is always staph for some reason.
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Namaste sisters!
Theresa, sounds like a very rough day. How is Skip now? Sandy, just be honest with your kids and ask for them to respect your decision--case closed. Love to all! xo
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Theresa-- I was writing while you were-------you did all the right things. Have a serious talk with Skip. He HAS TO make you aware of changing symptoms. Give him an ultimatum-----The line goes like this "We can't do something about that which we don't know". He may have been cured of something x number of years ago , but persumption that this is the same thing----use this word --arrogance. It will piss him off. AND then you can say----you came into my life for a reason--I love you etc. AND you Will cooperate. , Men are the worst at reporting and the best at denial. Things that are treatable learned about early enough can lead to life. Denial and ignoring can lead to death.
I will check in more frequently than usual. I just reviewed his syptoms confused speech and hesitant, as well as the starburst. Was the hospital he was taken to a stroke designated center? In his pervious hx, it was starburst and migraines only. We have 2 new symptoms confused speech and hesistancy ---DIfferent. Call home PCP ASAP and pull up on computer nearest stroke designated center. GOOLGLE SYMPTOMS TIA _TRansient Ichemic Attack----Check his pulse periodically regular or irregular. Undocumented irregular pulse, that is really irregular needs immediate medical attention----for example. BEAT BEAT BEAT BEAT- like a metronome is normal-----WHEN you feel beat..beatbeat,,,,beatbeatbeatbeta,,,,,,beat...beat-------to the er you go or call the squad. I don't like the 2 new symptoms at all----it's not Skip. Call PCP NOW FOR ADVICE---Unlessyou have a cardiologist call them -------------LOVe sheila______---do it now
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Theresa I"m so sorry to hear it was such a rough day. Im glad Skip is going to be ok, please keep us posted on how he is doing, will say a prayer for him too!!!
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JV Staph lives on our bodies ---staph auerus lives in the nose , ear, armpit, groin, anus, vulva, below pendulous breast, below pendulous aprons----any where that is moist. Staph epidermis lives on exposed skin. How long these bacteria have lived on the skin is unknown to me, but it's probably thousands of years. Problems occur when they become out of control. MRSA methicillin staph aureus and MRSE methacillin staph resistant epidermis. ARE our standard staphs that have become drug resistant because of over use of antibiotics. Try saline irrigation except lay your head back so it gets up there, I only had to do it once---hurt like hell and you wouldn't believe what came out. UGH.
refer back to my description of bleach baths------Web Md actually suggested that anyone working out in a community gym might concider a bleach bath once a month. I didn't include it it the listing, but may go back and add it. I would suggest making a copy of it because they are great references. Who knows whom you may have to make a suggestion to at a future time---make a file. Actually, I believe you will hear this as becoming the recommended within say 2years . Community acquire MRSA and MRSE are becoming more prevalent. I through a snit with my sons coach in 2002- 2003 when I found out the towels and uniforms weren't washed in bleach. I pointed out that the kids were sharing towels, it was considered cool to wipe the hand on the boot of the shoe etc.--------and why was it they all had zits( BOILS)?--------zits are staph. Plus they had mold in the weight room and on the wrestling mats---MY special nose on that one.
going to see if theresa has made progress-----L&H sas
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Thanks Sheila -- I woke him up about an hour ago to see if he would eat dinner, but he said he was comfortable. I will wake him again and check his BP and pulse. I looked up designated stroke center and our hospital is one of them. The doctor wanted to rule out stroke and believes she did, but she wants him to follow up with a neurologist. I called my sister (who works for our doctors) and told her, so tomorrow I'm to call them and set up an appt for him to see his doc, then he'll work with the neurologist. I looked up TIA also. Interesting that an MRI or CAT scan will not pick it up.
He had many migraines earlier in life and described the same scary symptoms - starburst today was in right eye and migraine started on left side, no nausea, and he was surprised, he used to always have nausea. He tends to stammer (hesitate) a bit in his speech normally, but today I could tell he was having a hard time getting the words out, which alarmed me. He said he could clearly think of the words he wanted to say, but they didn't come out as quickly as he wanted. This is exactly what the symptoms used to be.
I'll go check on him. :-)
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All is good -- BP is low, pulse is low, listened to his heart and it's strong and steady. He got up and drank some water. Not hungry. I told him we'd call and set up an appt for him tomorrow to see his doc and he said OK.
I'm tired. Thanks for all your prayers and cares! :-) Sheila - you're a wonderful nurse!
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Theresa ---he should have minimum and EKG, ECHOCARDIOGRAM, US of carotids. Should have been done at the place he went to ER. MRI is great , but a cop out if the others weren't done. I'm basing that on the 2 new symptoms.---confusion and hesitistancy-----which is called word finding. associated with the left hemisphere. TIA's can last from seconds to I think the limit is now 16-18 hrs(hrs vary by determination of the American heart association any given 5years). the importance is ---if it wasn't there before, things haved to be ruled out--- cardiac arrhythmia, carotid blockage. Left undx'd it can be considered over time a preliminary to a stroke. AND that is just the way they let it happen, before technology and knowledge caught up to each other. SO, He needs what I said besides the MRI ---MRI and CT only show damage. With a TIA becauce it is so small damage may not be evident. It' s comparative to a tree about to fall , you may have a limb fall off--momentarily affected the tree, but no discernable change--but then the tree falls. First time analogy, but I think it works. Closing to see if your responding L&H s
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Theresa-you may not get this until tomorrow morning ----please treat this as a get the ekg, echo and unltrasound as a tomorrow thing. What those 2 symptoms say is ---Skip who has always been lucide ---new--- he was confused sought help but had trouble finding the words. Right left & brain activity. The one that wasn't working was the left brain. Please advise as you know anything LOve sheila
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Theresa --celtic story time---i'm Irish so, there is always a story. I had a patient brought in by his three sisters because he was talking funny. All tests were neg. I was supposed to give discharge instructions. After interviewing him it turns out he had a stroke in North Carolina. Hospital associated with Duke ---6 years before. No one explained the different types of aphasia. He had expressive aphasia, but not severe. The family and he laughed it off figuring he was always joking when he didn't make sense, once I learned this I went to a place to cry. Then was admonished by my idiot boss. Any other boss would have given accolades---she is not a good person
I went to the patient and family and explained the differences of expressive and receptive aphasia. It had been six years that he knew something wasn't right, as well as his family. BUT his case was borderline. His management of it was to make to joke. All of them once, I explained, it was amazement, and anger, and joy because they knew why he talked the way he did. The light in his eyes caused the tears to flow again in my eyes, because he now knew, he had a reason for the words not coming out right. He hadn't had another stroke or TIA , he was just excited to see his sisters and his words got more jumbled than usual. It still makes me sad that he had to go through such a length of time not knowing that he had a brain dysfunction. Always trying to make a joke as to why his words were not understood. He should have been on disability. He fell through the cracks of the uncaring.
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Sheila
Thank God that gentleman found you. You are an ispiration and a shining example of what a nurse SHOULD be like. Your comapssion and care are inspiring. I only wish there were more people like you in the medical profession. God Bless you and may you continue to make a difference!
Love MARIA
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Tink there you are---in a do over i wish i could have come up with your screen name------I loved tinkerbelle too. Got to see the the original Mary Martin --Peterpan when I was about 6 y/o. In a Theater in the round. First time experience, No one explained it wasn't real. SO, when Captain HOOk came up my isle and grabbed me and showed his hook and my squeal. OH MY. My copy of MaryMartins Peter Pan --I think is lost. BUT if you ever get to see it, I believe it will become your most favorite. It lacks the glizts but it is close to the theartre that can be for that time. In fact lets seek it----I'll let you know and you let me know
There was a phrase, as you likely know that said " Tink there you are"
AND the there was a phrase when tink was dying and that if we clapped enough she wouldn't dye---as a 6 y/o I hurt my hands. --------Tink hadn't had thoses memories for along time. THanks
We each make a difference, how we sometimes know, and that brings us happiness. If we have caused others to bring happiness that we don't know about, it is our blessing.
Tink thanks sheila
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Irish Toasts to Friends & Family May you have warm words on a cold evening, a full moon on a dark night, and a smooth road all the way to your door.
There are good ships,
and there are wood ships,
The ships that sail the sea.
But the best ships, are friendships,
And may they always be.May the hinges of our friendship never grow rusty.
Here's to you and yours,
And to mine and ours,
And if mine and ours ever come
Across you and yours,
I hope you and yours will do
As much for mine and ours,
As mine and ours have done
For you and yours!To live above with the Saints we love,
Ah, that is the purest glory.
To live below with the Saints we know,
Ah, that is another story!May the lilt of Irish laughter
lighten every load.
May the mist of Irish magic
shorten every road...
And may all your friends remember
all the favours you are owed!Here's to the land of the shamrock so green,
Here's to each lad and his darlin colleen,
Here's to the ones we love dearest and most.
May God bless old Ireland, that's this Irishman's toast!I have known many,
Irish Everyday Toasts May you be in heaven a full half hour
and liked not a few,
but loved only one
and this toast is to you.
before the devil knows your dead.May you live as long as you want and never want as long as you live.
May your heart be light and happy,
May your smile be big and wide,
And may your pockets always have
a coin or two inside!Always remember to forget
The troubles that passed away.
But never forget to remember
The blessings that come each day.May you always have a clean shirt, a clear conscience, and enough coins in your pocket to buy a pint!
May the face of every good news and the back of every bad news be towards us.
May neighbours respect you,
Trouble neglect you,
The angels protect you,
And heaven accept you.May you have the hindsight to know where you've been,
The foresight to know where you are going,
And the insight to know when you have gone too far.May the saddest day of your future be no worse than the happiest day of your past.
May those that love us, love us.
And those that don't love us,
May God turn their hearts.
And if he doesn't turn their hearts,
May he turn their ankles,
So we'll know them by their limping.May misfortune follow you the rest of your life, and never catch up.
May you have food and raiment, a soft pillow for your head. May you be forty years in heaven before the devil knows you're dead.
May your mornings bring joy
and your evenings bring peace...
May your troubles grow less
as your blessings increase!May you get all your wishes but one,
so that you will always have something to strive for!0 -
Wow wanted to find someting for st patty's day ---found it---and a couple of surprises
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SHeila - thanks so much for all that great info!! One of my pre-op instructions is to take a shower with antibacterial soap! Maybe I'll add some bleach in the rinse cycle
:)And I loved the Irish sayings - I'm half Irish. Great grandparents were Irish immigrants on my father's side. Couple of relatives still in the NYC Police bagpipe band!
Luck of the Irish to all today! Happy St. Patrick's Day.
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