Class of 2009 - Sisters in the same time frame
Comments
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I saw my Onc yesterday and she said there is some kind of post-chemo arthritis that some women get after chemo and that it goes away. Not sure I totally buy that but thought I'd share.
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Hi Ladies,
I am back in the land of the living today. Still feeling a bit yucky, but I am making it thru. Thank you for the kind words.
Hope you all are having a good day today.
Hugs
Jen
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Jen ~ I hope you can rest this weekend and start to feel better soon.
Healing hugs...
Alicia
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Jen glad you are feeling better. Praying that you heal up rapidly!!
Juanelle and txtstardust - were ya'll in the areas that there were storms? I hope you are both safe. They say they are headed to Alabama. I'm praying that we have no bad tornadic weather tonight or tomorrow.
Take care ladies
Renee
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Just wanted to pop in to say hello to all...I don't get much time to write, but I do read all posts...hugs to you all...
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HI ALL
LILAH
I recon thats sounds right so many women including my self are feeling it maybe if your prone to get it in later life it will effect you post chemo???? any way im feeling a bit More flexible today so hopefully its easing of now.
Hope you ladies in the storm area will be fine if not make sure yous get blown out my way and ill make you a nice cuppa lol
JOJO
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were there storms in Texas? Hope all are ok.
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No storms here in San Antonio, just heat heat heat. It was 86 degrees yesterday! Supposed to be 82 today. The joys of living in South Texas. Had to turn on the a/c already. Juanelle, did you have stormy weather?
I've got the arthritis feeling in my knees. I do believe it is the lack of estrogen that causes it - I'm still in chemopause.
Renee, how long after chemo did your hair get to a length that you could color it? Mine seems to be growing so slowly! Three months PFC and you can still see my scalp through my short short hair. It used to grow so fast! And it's definitely darker than it used to be, which i think is due to the fact that it never sees the sun just yet. I don't want scalp sunburn, so I always wear a cap. But there's no gray, a small favor from the universe!
Jojo, great news about the good test results. Have fun with that puppy and having time to relax and enjoy life!
Jen, hope you're feeling even better today.
Peace to all!
Shelby
Have a great weekend everyone!
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I had heard there were bad storms in the Texas pan handle. I didn't know where Juanelle or Shelby lived and the weather channel had said that is where our "stormy" weather was moving in from.
Shelby I had chemo when I was 16 which was over 30 yrs ago and I didn't lose hardly any of my hair. I didn't start coloring my hair till I was 18. I didn't have to have chemo with BC, so I'm not much help.... sorry. Maybe someone else can help you out with the hair coloring question.
Renee
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First all of you in the storm torn regions hope all is well and that no one has any damages!
Jen, you deserve to take a day off and do nothing but take care of yourself.
Paulding Mom, I'm always analyzing my dreams. I even have dream books. I agree that calm water means that you're in a calm place or a calm mind. Fishing is considered spiritual, feeding yourself what you need in life. No one else is feeding your needs you are finding a way with whatever comes your way (bugs, worms etc) to use what comes along to feed your body and soul so that you can maintain a peace in life and within yourself. Now I'm no expert, just my view on your dream.
Now to the topic of hair, I don't want to loose mine! I want to use the Penguin Cold Cap. A nurse told me they don't work, but she doesn't have cancer and never used one. I think nurses don't want to put the extra time to get them and show you how to use etc., all women who used them seem to say they worked for them, maybe a little thinning but they keep their hair. Jo Jo I use Nioxin hair products. When my hair started coming out with Avara a medication for arthritis I got this it kept my hair from falling out and helped it look thicker than it was. It takes the chemicals out of your hair. I was thinking of after a chemo treatment to come home and wash my hair with this and then every day til next chemo treatment. My girlfriend who used it that way, her hair thinned but she didn't loose it all. So I thought the Cold Cap and then Nioxin maybe I could keep my hair?! Nioxin even comes in one for people who color their hair so that you take out the chemicals from chemo but not the color.
Now to chemopause. I spoke at length with my Immunologist/Rheumatologist about bone pain with Tamoxifen etc. She is wonderful, she is a professor as well as a doctor on the subject. I went in so down and she brought me back to a "I can do this attitude". What she said is that it's bone pain not muscle or tissue pain. Because these drugs effect the bone as well as the blood. I have connective tissue problems but she said that Tamox wouldn't effect that as much as it would my bones and given I've had osteoporosis and took Calcitonin injections for five years (this was before they had nasal sprays) It's probably not the best for me but the Cancer doctors need to discuss things at length with her. Arthritis comes from your body fighting your good cells, like allergy! My doctors told me people with severe allergies are prime candidates for arthritis. My arthritis is a secondary disease caused from inflammatory bowel disease (something I must have put out of my mind and was told this week to remember). I'm so worried about these aches and pains because I already have them and can I take them intensifying with chemo? I will find out all on Monday. But I'm cleared to go for chemo. I'm still running fevers but my blood count has come up just barely but finally. So drains will come out after six weeks and port is suppose to go in etc. Hopefully!!
Michelle "Happy Earth Day", sorry ladies but I've been one of those Green People for a long time! With teenage daughters and a large yard and garden I use 3/4 less water than my neighbors who have no children. We recycle everything and I never have over a $40 electric bill in a three bedroom, three bath house. I'd love solar panels but just can't afford them. My friends all have them and they never pay anything for electric, all summer they use their air conditioner full blast, in winter heat their pool, and pay nothing. I had a electric lawn mower, however after my children blew up four of them in two years, I'm thinking of a gas mower for the first time, I can't afford replacing mowers. I wanted to change landscaping but this year is not the time.
Well ladies hopefully I will start things going finally. My doctors want a scope of my inners before hand, and a PET scan because they can't figure out why I've lost all feeling in my right leg. I feel my feet but nothing above the ankle. It's from my spine. So they are looking for a tumor somewhere, or why this has happened all of a sudden?
However I'm enjoying 80 degree weather today and my wonderful daughters have made a limeade with agave (no sugar) that is out of this world. Think this will be my drink for this summer. Every year William Sonoma had a wonderful Margarita Mix of different flavors, like grapefruit and we would make Virgin Margarita topped off with a sprig of mint from the garden. My neighbors and friends have already asked what's the flavor for this summer. They all stop by and we make sorbets and drinks for all. I hope I can do the same this summer? But I'm sure enjoying my limeade as I write. Life is good isn't it, even with BC!
Take care all of you. I was telling my doctors that I am able to voice my opinion make good choices through all of this because I've been educated by those who have come before me. No doctor has ever told me or prepared me for this journey as much as all of you here. So I toast you all with love and thanks.
P.S. Also a big cyber hug to any of you ladies I didn't mention personally! I seem to have such long posts that if I mentioned everyone that I wanted to I would go on and on and on like the energizer bunny!
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M360 I'm so glad that you have been cleaed to get chemo and possibly Tamox. I know that sounds strange but when I see all that you have been through and the fact that we know you have had such difficulties... I am so thankful that you are going to be able to get treatment other than just the surgery. So I am sending big Hugs to you!!! Also, I want you to know you are my hero, because you have stayed so strong and continue to do so in the face of all the medical problems you have had. I have never met anyone like you. You are an awesome woman
!!! Enjoy your limeade and have a great time this summer with your daughters. P.S. I don't know if the cold caps work, but I have heard many ladies say that they do. I had chemo when I was 16 and I didn't lose my hair it only thinned in one spot. I do believe this... there is an old hymnal that says "most of the battle is a made up mind", I trully believe that holds true in everything we do even in our hair. I said back then I wouldn't lose my hair and I didn't... Prayer is a very powerful tool! Praying right now that these tornadoes that are spinning off don't do any major damage in Cullman. My son is in Birmingham on his way home from Louisana and my daughter is just stupid and out with her boyfriend in Huntsville with her 15 month old daughter in all this tornadic, stormy, rainy mess!! Kids do they never grow up?
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Just popping in to say Hello. So HELLO.
We did have storms here last night, but they were not too bad. We received about about an inch of rain. That would make about 3 inches that we have had this week. I woke up about 12:30 and it was thundering and lightening and I could hear the rain, but the wind didn't blow here and it didn't have anything in it, like hail or anything. It just make it hot and humid here today.
Hoping everyone has a great weekend. Get some needed rest. I am still working 6 days a week and 12 to 15 hour days. It should all be over this week and we will all settle down to normal, or at least what we think is normal.
Love to all you wonderful ladies.
Juannelle
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I'm glad to hear you ladies in the south are okay and not affected by the tornados. I'm just watching a story about this on my local Canadian news, it's the top international story tonight.
Juanelle - do take care of yourself. You've been through a lot these past six months. I hope you get to relax a bit a work!
M360 - you are an inspiration. Regarding the Penguin Cold caps...I haven't tried myself but recall there being a specific thread about them on this website. You might want to check it out.
Sherri
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HI ALL
M360
IVE HEARD THE COLD CAPS ARE GOOD AND THEY WORK BUT SOME ONCS DONT ENCOURAGE THE USAGE OF THEM THEY SAY THAT THE CHEMO DOESN'T WORK FULLY IN THE AREA'S THAT ARE AT THAT TEMP ,CHECK OUT THE WEB SIGHT I READ IT THERE .
sorry cap locks was on and i Carnot be bothered re typing, hey my body has been feeling pretty good the last few days not so much aches, so soon ill be doing back flips and cartwheels , lol imagine me even trying that id end up in hospital.
I'm coming to the end of rads ive got around 11 i think, somewhere around there anyway ,and i can feel the nerves starting to rise up ,I'm thinking while I'm doing treatment it feels like a nice safety net under me and when I'm finished with it all the net is gone and I'm feeling like ill be in limbo with cancer any one else this nervous about finishing .
JOJO
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Jojo, I felt the same way about treatment and started to panic a little when it was done...it goes away, or at least it did for me. I guess part of it was that I just plain old stopped worrying about it...hell, if the cancer is coming back then it will come back and I will simply deal with it...I have given it my best shot...
M360, my dream house would have solar panels. I would love to live in a total green house...of course I can say that since it will never happen, and I am sure there are some things I would have to give up...I know there solar rechargeable battery operated mowers. And don't forget about the old push style mowers...I think we will invest in one of those this year...we have a SMALL yard.
Sending happy thoughts to all those in the south, hope they stay safe in the nasty weather.
Found out on Friday that the Dream Cottage people have selected a cottage for us in Haliberton..about three hours away from here...Yahoo..
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Michelle congrats once again on the wonderful Dream Cottage getaway for you and DH! You both need it after everything this last year has brought you. May you both find that special quite time away to reinvest yourselves in one another and to just relax and enjoy.
Juanelle I am so glad that your overtime is finally coming to an end this week and you will be able to slow down some and enjoy what is left of Spring. :=)
JoJo, so happy that you are feeling better as well, how awesome is that... please don't do any backflips and hurt yourself we would all have a hard time getting over to Australia to visit you.
haha!!I survived all the stormy, tornadic weather that blew through here last night. I didn't get in bed till around 1 a.m. but I'm about to settle in for a quite afternoon of Talladega racing on the t.v. (gotta do it) Go Dale Jr.!!! for any of you Nascar fans out there.
Have a great day!!!!
Renee
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Hey, everyone....
We did have lots of wind and heavy rain, but no damage thankfully. Our roof is just about a year old from Christmas Eve, 2008 storms that took part of it off. Hope everyone is safe and dry. Renee, from what I've seen on TV, Alabama got pretty rough weather, too...glad you and your family are safe. I sure did want Dale, Jr. to win today's race, bless his heart, he's had a rough couple of years!
I have hanging baskets with artificial flowers on my front porch and the little mama bird that built a nest in one of them was frantic yesterday with all the wind. But, her little nest and eggs survived...she has been very watchful today and hasn't strayed far!
My DS has grown up so much in the last 9 months....just last summer, I was still taller than him, now he's outgrown me by 4 inches and just loves patting me on the head! Somehow, during the whole surgery/chemo process last year, we went from me tucking him in bed with goodnight kisses, to him tucking ME in bed with goodnight kisses!! I love my son!! He is my heart and I look at him and am so proud of the young man he has become. Still just a baby at 14, but he seems such an "old soul". The past year has worried and scared him, and educated him with the type of "booby talk" only families/friends of us bc-ers know and appreciate. And through it all he has been caring and compassionate and even a little rascally with his sense of humor! I love that kid!
Ladies, I'm thinking of y'all tonight and so thankful that I have you to laugh, share and commiserate with.....you are very much loved and appreciated by this gal!
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What a great tribute to your son! You should print this and tuck it away.
pam
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Wonderful idea, Pam....I will do that!
Feeling very thankful and reflective today, as you can see!
Hugs to you and all!
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Psalm121,
You can get it out and read it when he has his first car accident! :-)
pam
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PSALM 121
Hang on i have to wipe the tears from my eyes , that was beautiful how touching i to have a 14 yr old and a 17 yr old son and i feel the same they are treasures in my heart such beautiful boys with big caring hearts by golly the women they marry BETTER be good to them or they can come back home to mummy lol
JOJO
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Good Morning JOJO!
Oh yes definitely he'd better marry a woman to be good to him and appreciate him! He's kinda stubborn, too (get's that from Daddy!) so maybe he'll be okay.
It's not morning in Australia, is it?
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Survived the storm. Not such a great day for a garage sale. Glad to hear everyone else did okay in storms. I managed to scare a 60 pound dog when I screamed during the storm. Dang lightning struck nearby at the same time I pushed the button on the garage door opener. Scared me and then I scared the dog. Poor baby cried and cried.
Aren't sons great. Mine was away at college and had already signed up for summer classes when this mess broke out with Mom and I. He dropped all his classes and came home to help. I think he was more worried than DH. He even took me to one of my outpatient surgeries and this kid HATES doctors. I thought I was going to have to drive him home.
It's Monday. I'll just reflect on the good times we had this weekend and get through it. Sending good vibes to all of you.
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Pauldingmom ! Beautiful story ~ so much of it parallels me and my kids. I am grateful to have such wonderful kids that took good care of me. They have been through a tough few months. I see the sparkle in their eyes returning as they see me starting to look and feel better.
Thank you for sharing such a beautiful post.
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Moms and sons have a special connection. And you all have great sons! And they all have great moms!
pam
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Ladies, Ladies, Ladies.... What to do?!
Today I went to Onc Surgeon and finally got my drains out, he then said I scheduled you to have your port put in on Wednesday morning. Now go down and talk with Oncologist about what chemo will be best given your situation medically. Now the joke and a half begins. The Onc was over an hour late, then said his program that he uses to determine what would be best for me was down and not working. I said I was cleared for Cytoxan and that my doctors would like to talk to him about what other chemo I would be given. He then said Aromatase Inhibitor. I said my doctors said that's not an option because I had years of osteoporosis and had too many fractures. He said well it's not going to prolong your life that much anyway. You have a 15% chance of cancer returning if you don't take chemo and a 10% chance of it returning if you do!
My daughter recorded the whole situation so that I could come home and listen again and share with my other doctors. He said you had a radical mastectomy and we removed many lypmh glands and we think we got it all out. I thought, you think?! You can have check ups every other month to make sure you have no recurrence. I sat there thinking I have to do it your way or no way at all?! Did you even look at my papers. He then said you have a bigger chance of dying in 10 years given your other medical problems. In which I said I'll live to be 100 Thank You. I guess I have an 85% to never have a recurrence and I have a bigger chance of being hit on the freeway in California!
I am so disgusted with all of this. I spent all day in the Cancer Center to get his responses, he said I'm a nice guy though... I thought I don't think so!
So I wrote to my doctors today and will wait. So many conflicting ideas from each doctor I see.
I can't cry, I don't know how to respond or what to do?! My PCP, emailed me on Friday to say she would be away all this week and if anything came up to email her which I did. She is not going to be happy.
When this started I was told I couldn't have radiation or chemo and the best thing was the surgeries, which I had, but then because of node involvement I was told I had to have chemo, but the % is very small if I do or if I don't. The complications from chemo for me are much greater. I think they just don't want "me" as their responsibility if something bad happens.
It's going to rain the next three days, or I'd be pulling weeds like crazy and gardening up a storm out of frustration.
"Life is like Russian Roulette for me, you never know when the next bullet will hit..."
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M360 -- how frustrating! You need to get the opinion of another ONC. Clearly. This one can't handle your case. Are those numbers really correct? (15% vs 10%). I never actually asked what my changes of recurrence were if I did not have chemo -- I simply had it because it is the standard and because I was told my chance of recurrence would be 10% (which is less than the chance of OCCURENCE for healthy women... that is 12.5%). I was also told that HER2+ is treated with Herceptin... and works best when given with chemo... but in your case perhaps Herceptin alone would be better than nothing? I see you are positive for HER2... has anyone mentioned Herceptin to you?
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M360-That onc. needs to go. Yes mine was very blunt in telling me what my chances were of recurrence, he didn't treat me with kid gloves as my surgeon had. But in the end,chemo for me, was just another way to make sure they got it all and got it as good as possible.
The fact that he was that late really stinks. I understand that docs. get busy and have emergencies. I hope the staff did what they could to make you comfortable and informed during your wait. Waiting can be so difficult.Fight like a girl sweetie and give um he!!.
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M360
Dont worry to much over, it i know it must be really frustrating for you wait to talk to some one else, it will all work out soon for you, big hugs
Psalm 121
No it wasn't morning when i wrote that, it was night time i just looked at the time it said on the post i would have been still snoring then lol how funny don't know how that happened
I'm nearing the end of rads around 7 to go my skin is holding up well ive breezed through this and my body isnt to achey either yah for jojo
JOJO
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Hi ladies-
Well since I last checked in I had to take my husband to the emergency room on Sunday afternoon. He went into Atrial Fibrolation, that is when the upper ( or lower, not sure which) chamber of the heart does not beat in a normal rythym. So, we went to the ER, they admitted him 4 hours later and kept him overnight. He was scheduled for a cardioversion at 9am yesterday morning. They were going to take him to the ICU at 8am to prep him, then at about 7:30am he converted back to a normal sinus rythym. All the while I had an appt. with my onc yesterday morning to go over my bloodwork and discuss my dizzy spells I am having. My onc told me to stop taking my Tamox for a month, then he wants to see me back in a month. He also ordered more blood work to see if I am anemic, which he doesn't think I am.
So, I got my DH home yesterday about 1:30pm and he is resting at home today. He is only 38 and hasn't had an episode of A-Fib in over 5 years. He had pretty regular episodes of it in his early 30's. But then, he changed is diet, started excersising, actually he is a 2nd degree black belt in TaeKwonDo. But, lately he has let himself go, his job is consuming him. He works 60 hours a week and even when he is not at work he is thinking about it and worrying about it. he isn't eating right or excersising. So, I think this was bound to happen, unfortunately. He is back on Toprol, and hates it, but he has to play by the rules for now with this.
I am wore out and just plain tired! M360, My prayers are with you as you go thru all of your ordeals with your onc. He has to go, find someone that is willing to work with you and be on your side. This guy does not sound like a good dr. at all. I would have kicked him to the curb a long time ago. You have more patient's than I.
Psalm- I am so touched by your story about your son. My son is also 14 years old. And he has also grown a lot in the past few months. Take care
Hugs
Jen
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