Chemo Starting Sep 09
Comments
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I know I've been away too long when I come to BCO.org and have to sign in again! After our frozen vacation I had to knuckle down for our winter show and it was a biggie. Now I have some room to breathe and check in with my sistas.
I'm so glad the chemo is being relatively good to you Ronnie, let's just keep chanting that while it is leaving your hair alone it is kicking the crap out of those lumps in your liver. My mom's original chemo was CFM (I think that's what they called it) a kinder, gentler chemo which left her with a full head of hair. When the liver mets came up years later, they doused her with Taxotere which, as some of you know, is a nasty little number. But it worked. I think what you are on is the latest and greatest...so I just know those lumps will be screaming "I'm shriiiiinking" in no time. And 10-years from now, no one will know they were ever there.
I'm glad to see that you are taking a real vacation Jane. No cleaning closets. You too Barbara. Be bad and let those dust bunnies just stay in the corners for a few days while you take a break.
Gil, I checked out the podcast but just as I got ready to sing about the snow falling my PC siezed up and wouldn't let me hear any more. Might have something to do the 16-year old downloading heaven knows what all afternoon. I liked what I heard...made me happy to hear your lilting voice. I'll try again when the boy is at school.
Vicki, I am always impressed how you land in a new place and immediately make it your own. I too read up on the Alkaline water after reading what people are saying about it here on BCO and I wasn't impressed. And Ronnie I wouldn't worry that drinking it affected your chemo. I've always had a hard time believing that it would be so easy to negate the effects of chemo. If that was so, how come they can't get rid of all the nasty side effects! I was told not to take any anti-oxidant vitamins during chemo because they would stop it from working. Really? If those vitamins are so powerful how come I got cancer while taking them?
So nice to hear from our friend downunder!
I'm all for a reunion in Seattle!
Patty
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So good to hear from Neece - and the rest of you, too! Hope Ronnie will catch us up on things so we'll know how to help with prayers, thoughts, chanting or ....? We love you.
On Monday, we just had a confirmed diagnosis on my DH of Multiple Sclerosis. He's likely had it for the last 25 years (which explains a LOT - including bouts of severe depression, a leg that "wobbles", extreme fatigue, unable to deal with stress). He will now be seeing a neurologist and likely a physical therapist. This weekend he awoke with a numb arm and hand and no strength (couldn't even open the front door!!). We called the dr. who had also received the results of his brain MRI and it was confirmed based on symptoms, history and the MRI.
It almost feels like the grief experienced when finding out I had cancer... but it's different. This is a mix of relief (now having a reason for unexplained things for so long) and grief. MS is an autoimmune disease that attacks the myelin sheath that surrounds the nerves resulting in damage, scar tissue and all the side effects of problems with the Central NErvous System.
It comes in waves or attacks and remissions. We're hoping his arm will return to normal through remission.
And So we are thinking about adjustments we may have to make for the future, including a reliable car for long-distance trips to the dr. (2 hours to get there) and PT. Already I am seeing part of the impact on me which includes physical work that he can't handle right now.
It's just another part of the journey... not one we wanted to take... but God is faithful and will give us strength we need for the day!
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Sweet Sisters...thinking of you all! So happy to see the post from Neece! I don't know if she'll read our responses but please know we think of you always & wish you continued health and happiness & God Bless for taking care of your loved ones. We know you'll be an awesome Grandma & it's exciting to know you'll share that loving spirit with your little bundle! I think it's really quite interesting that there are so many Australian sisters on bc.org. Thank you for being a part of their network!
Jane...Good for YOU, doing walks for The Cure...some day it will happen! OMG...I can only dream about 6 days on a tropical island!!! I know you'll have the most wonderful time with your DD. It's really a marvelous thing to get along with grown children, isn't it? I remember when our oldest daughter turned 30...2 daughters & DIL and I went to San Diego and just had FUN! Birthday girl got a tattoo but the night before that I had gone to bed and the 3 girls said they were going hot-tubbing. I woke up at 2 am & youngest was in bed with me but the 2 other (free spirits!) weren't in bed. Of course my mind had them kidnapped. I went down to the pool area and there they were-stark naked-in the hot tub, with the handsome security guard in a lounge chair just loving every minute. I just shook my head and went back to bed. We had a topic of conversation the next morning
So...if you and DD want to skinny dip, I think it's ok!!! I think you may be finishing your MAJOR show of the year as I type, Patty. I just can't get enough of "4 Weddings" or "Say Yes to the Dress"...I know, I need a life.
It's been an emotional morning...as DS, DIL, Josie & Grandoggie just left a couple hours ago to drive back to Long Beach, CA. They've been here for 7 weeks, minus a week here and there. Maybe I already told you DIL and Josie spent time with her mom in the northern part of WA. She had a broken hip replaced & then was diagnosed with cirrhosis of the liver. Poor Nessa didn't know if she'd ever see her mom again as it looked pretty dire but they'll do more tests to see her prognosis. Now I need to start getting this place spruced for our friends who are coming on Saturday from San Diego & Idaho (both San Diego neighbors, dear friends). I'm very glad I'm not working...as I tire so easily from treatment that I'll dust for a while & lay down, vacuum and lay down, etc. Makes a long project longer! I was moved to tears (which I am quite a bit anyway) on Thursday before going to treatment when I called my school district. I wondered about my insurance coverage while I'm on extended sick leave. The payroll department said coworkers from my office & the school where I was secretary have donated shared leave, so my salary is paid, possibly until the end of the school year. When I retired before I had enough sick leave to cover 5 months before retirement kicked in, so I really didn't have much sl accrued. WOW...I was so touched. When I know how treatment is working, I'll make the decision as to whether to go back or not. My family says no...and I'm inclined to think they may be right
Wanted to tell you about treatment. Before tx #3 I found out I was approved for the 3rd drug - perjeta (pertruzamaud?-another biological target drug) - the cousin to herceptin, which shows lots of promise in extending time, but it was too late to add it to my Thurs treatment so I had it on Friday. It kicked me to the couch! It's also supposed to cause severe diarrhea but my chemo drug constipates, so I'm hoping it all evens out! I only get the perjeta every 3 weeks. SOOOOOOO...4th tx was on Thursday and sadly, my white count was too low to get chemo (can you believe I'm sad about that!), I did have herceptin & neulasta (remember our "kick my butt" answer to low white blood count!). BUT....drum roll please! My liver enzymes (which show tumor status) were NORMAL!!!! (which just made me wish for chemo more!). We were so excited. It's a really good thing. I have my meeting with onc on Wed and she'll explain more about what to do about treatment. Hopefully the neulasta will do the trick. I have more of the chest pain...still remember Vickilynn's awful reaction...this time. Last time I just had leg aches. This is more in my ribs. Anyhoo...maybe they'll lower the chemo dose, don't quit know. Just want NED to come play for a long time!!!!
NOW...for a visit to Seattle! Has anyone (not countin Gilly...I'm sure you've been here lots) been here before? I would love, love, love to have you all come. Time is totally open for you, dear Sisters....you are truly one of the most important parts of my life. We have a "granny" van so no cars needed. The only month that's really guaranteed to be beautiful here is September....of course, that's because kids have to go back to school then
Spring & Summer are truly beautiful....just sometimes there's a shower mixed in We can keep busy or just chat....eat chowder & chocolate!!!! Vickilynn...YEP...Seattle Cancer Care's breast pharmacist came to see me at tx & said no alkaline water...it's an anti-oxident, not good. I am so trusting in modern medicine & don't know what I was thinking. Guess at that moment I lost sight of the people and the God who are caring for me. Interesting...my priest gave me annointing of the sick last Wed evening and he told us that on the plane coming home from a conference on the east coast he sat next to one of the pre-eminent breast cancer surgeons who was coming home from a conference in Geneva. I asked who...he said Dr Ben Anderson...just happens to be my surgeon
Small world!Once again...I'm rambling! I promise when you all come, I'll practice letting others speak
I love you all & wish you a beautiful week ahead. Family was coming to watch superbowl but they have colds so they're protecting me & staying home...will quietly watch and wish the Seahawks were playing! Any baseball fans in the crowd??? Mariners will be playing in May...HAHAHA...maybe playing the Marlins or Devil Rays, or Padres (one of my favorites!), the Angels or Athletics, or heaven-forbid the Detroit Tigers (who have a few of our best players!). Just kidding...until the Ms start winning, I won't even pay to see them LOVE YOU!
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Hello SOSisters.... another Monday out of the way. Have I mentioned that 99% of the time I love my job? I am so blessed to be able to say that!
Patty - I did clean out my closet and DH's closet. The Goodwill got 6 bags worth, plus I put 3 bags in the trash. Sometimes you just have to do these things! The cruise will be 6 days of nothing but relaxing, I'm a little concerned that I'll drive DH nuts wanting to do something. I plan to have several books downloaded to read while basking in the sunshine! How did your big show go?
VickiLynn - I'm so sorry to hear about Don. I know you are relieved to finally know what is wrong but also anxious about another medical journey. Would you move closer to the dr and pt? How is Don's arm? They do miraculous things with pt these days. We will start chanting that he will go into remission now!
RonnieKay - I love your posts. Mine always seem so short after seeing one of yours! Sorry you couldn't have chemo (not) but the fact that your liver enzymes were normal is fantastic. You just keep on doing the chemo, obviously it's helping in addition to our prayers and chants. I am so glad you are going to get the perjeta. I was talking with the lady who runs the American Heart Assoc. last week, she used to work for the BC Center. We got on the subject of Herceptin and she was quoting all sorts of great statistics about it and how it had helped so many women. So DD is going on a cruise next month, DH and I are going in April. I'm sure if DD and I were going together we'd have a good time. She is a great daughter, calls me or I call her everyday, see each other at least once a week.
So ladies about Seattle - I would love to go if we can settle on a day. I wouldn't really be able to get away until May/June. Think we could coordinate a visit? Let me know what you think!
Thoughts and prayers are with you. Take care.
Jane
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Sorry I havn't been in for a while, every time i think the restructuring at work can't get any worse it seems to. So on the weekend I avoid the computer since i'm on one or in meetings 50 plus hours a week.
Ronnie I hope you are well and you are in my thoughts and prayers.
Neece so glad you checked in.
Vicki Thank you for the website info and hope you are well.
Gil very nice website, well done.
Jane I am so jealous of your temps, it has been so cold and snowy in Michigan I'm beginning to have trouble believing in global warming. Hope the severe weather wasn't too bad.
Ronnie and Jane. Sounds awesome, not a chance I can come. I, for lack of a better word, got screwed at work on Paid Time Off (PTO) long story. AND you can't take time off without PTO, or be fired, so what Little I have I need to save to go to the Dentist in March, Bone scan and blood work in April, oncologist appt in May and the lovely diagnostic mammogram in June, YIKES. Even with all the bad weather I've had to use my lunch time to come in late :-/ Not fun.
It will get better PTO wise in August, but I am really not sure I will even feel comfortable taking any extended time off due to the restructuring work enviroment.
If you ladies go though have a fun-fun time, and toast me with a glass of wine, or sparkling water.
Hugs to all of you and prayers and well wishes for warmth and good weather.
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This is so weird...when I typed my last LONG post, I hadn't seen there was another page & now I see that Don's had a diagnosis, and the post about your Mom's journey through bc, Patty. OMG...I will read and then post. I feel awful!!! Be back soon! XOXO
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Hello SOSisters.... so anyone interested some Carnival Cruise line tickets cheap? OMG, wouldn't you know that when we finally decide to try a cruise that this would happen. I know that Carnival will be making sure the ships are up to speed, but..... DD leaves on her cruise next Saturday, hopefully she will not require any red plastic bags!! I suspect we will go anyway but I'm not 100% sure.
Hope everyone is doing well, we are due to have snow today. 1" their predicting. Will completely shut us down (we Southerners don't do snow well).
I'm not going individual posts today, need to get ready for work. Just wanted to check in and see if everyone was doing good and say hello.
Take care dear sisters. Thoughts and prayers are with you.
Jane
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hello gorgeous girls, another quick post from DownUnder . VickiLynn I was so sorry to read about your DH, MS is such a nasty illness. I do hope the therapy helps him. I just cant help thinking, haven't the two of you dealt with enough already???
Ronnie Kay sounds like your beautiful spirit is shining though despite the chemo, neulasta, etc. Hang in there. Good news on the blood test results though.
Just to share, our little grandson was born last Thursday afternoon, after a long gruelling labour he arrived by emergency C section. His mum is tired and sore but OK and little Liam (well actually not so little, that was the problem) is healthy and gorgeous. My DH flew up to see his son and stayed the night, went the following day to cuddle his grandson, I am so jealous as I have not seen him yet! However we will be making a trip up in a week's time.
love to you all.
Neece -
NEECE!!!! Congrats! grandsons are .... wonderful : ) enjoy him thoroughly.
Enjoyed a week of beautiful sunshine and bracing for a snow storm to hit tomorrow... we should only get 6" but we haven't thawed out from the big one in December... and snow is still piled all around us!
DH and I are working through feelings about his diagnosis and we're both realizing there are strong days and weak days... and we just have to take each one as it comes. He hasn't seen a neurologist yet - we knew we'd have to travel 2 hours to see one, but they referred us to one 3 hours away! Still waiting for an appt.
We visited our grandkids Monday, Tuesday AND the Pacific Ocean... always love that... ate clam chowder, walked on the beach, enjoyed the sunshine... The walk on the beach proved too much for DH - and his legs were weak for the rest of that day, but doing well today.
RONNIEKAY "kicked to the couch" doesn't sound good. Tell us what's going on this week. Love you and praying for you.
EVERYONE ELSE: love you too!
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Vickilynn...My prayers & hope & thoughts & more prayers are with you & sweet Don always! I know you feel relief at now understanding the many years of struggling through different difficult times...but I can't help but be amazed that you've been together, loving each other, supporting each other, through all of it...not to mention raising your family and giving love, time & energy to the many friends you've met along your journeys. And that won't change. But I'm glad you're listening to your bodies, knowing there are days for rest and days to shake it up a bit
Keep taking those walks loving God's great earth (not in a foot of snow, however!)...lovin' those kids and grandkids, and I'll be praying for strength, healing & understanding. Love you so much!Neece...I absolutely adore the name Liam. Hank & Hud's cousin is Liam...and I love Liam Neeson too
Can't wait til you get to cuddle him in your arms. Patty...A whole bunch of stage 4 gals are on taxotere but my onc won't use it cause I already had it. Have to say that I'm glad to keep the hair....although I grilled her bigtime making sure that if it was going to rid me of those bad cells, I'd do it again. My liver enzymes are still normal and all my other counts have gone down...a very good sign. When I wanted to declare myself headed to NED, my onc was very guarded. I'm still hopeful & faithful that God has a plan for my future on earth!!! My wbc soared after neulasta and I was hoping that I wouldn't need it unless counts went low again but onc wants to give it every 4th week...so that's this Wed. I was kind of bummed last week...we had our out of town company and had a great time, felt terrific, but on Wed woke up with a swollen, red lump above my ankle that turned out to be cellulitis, a skin inflammation from what was probably the little cut on my foot from where I stubbed it on the scale in the middle of the night. I even cleaned it with peroxide but here's where compromised immune system comes in
No more barefooting for me. I've spent the last 5 days on the couch...yep...on the couch, I can't stand it! Have to keep the leg up and take Keflex. Other than that, side effects are almost non-existent...YEAH!BarbAnne...I wish work wasn't so draining...but I have a feeling you're the most incredible employee they have...NO DOUBT! We would miss you terribly...but maybe some day we'll make it to Michigan~in the summer! Hang in there on the weather front~I remember you taking your walks along the flowering trees in April
That's not far away, sister!!!!OMGosh JANE...Your daughter & you & DH better be treated like royalty on the cruise line! My SIL who just returned from a cruise to Hawaii said it's no different than being in a car wreck or blah, blah, blah....I think being in the middle of an ocean on a burned out ship with no food or toilets is pretty much awful!!! She said she saw someone on the news with a shirt that said, "Ship Happens"...someone's making money! You must feel like you conquered a mountain with your new closet space! You've motivated me...again! I went through a few weeks ago and got a bag full. Now I'm in a dilemna, have lost about 14 pounds and my favorite cords from Ann Taylor Loft (grey, brown, black & mustard), the only pants that have fit forever, are too big. If I give them away, I'm sure to gain weight and need them, although, being on the "Save My Liver" diet makes me just a little more aware of what's going in my mouth.
Love you Gals...thankful for the fact that we're all here for each other.
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Hello SOSisters.... hope this finds all of you doing well.
VickiLynn - I sure hope that you aren't buried in snow! How is Don? Are you able to get back and forth to the doctor and physical therapy?
Neece - congratulations on the grandbaby! They are so much fun, so sweet and you will want to babysit all the time! I'm sure you have had time to visit by now, don't you wish you could bring him home?
BarbAnne - hope work is going okay. It sounds like you have your hands full.
RonnieKay - I LOL when I read "Ship Happens". Had to share with DH! DD is on her cruise now, they are in Nassau, Bahamas today. She's having a ball. Grandkids are here with us, at 18 and 15 not much to take care of - make sure they have something to eat, otherwise they pretty much entertain themselves. I may make them play Crazy 8's or something - got to get them to stop texting! I hope you are doing well and chemo is going okay. How's the leg? Are you walking?
Take care sisters. Thoughts and prayers are with you!
Jane
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A very sad day... another friend (a woman in our church family here) was just diagnosed today with invasive breast cancer. This is her 2nd round. First time was 9 years ago - lumpectomy and radiation. This time a mast. is almost certain. I cried today for her and for all my sisters. I really do hate cancer.
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Happy March, Sisters!!!
I know Vicki...I hate it too! I was so sad and kept saying I did everything I needed to do for this not to come back...but everyone's does!!! Just don't get it. I'm sorry for your friend...and hope that her treatment will be kind to her and a good, long, healthy life awaits her! In the meantime...hoping you and Don are doing well and that maybe there are some wildflowers blooming for you! I just saw the first rhododendron of the year & it was such a welcome sight!
We just got back from 2+ hours at the park by our place with the grandsons. Mama's at her orchestra rehearsal so we were there to referee on the climbing gear! Having been a recess supervisor (and a mom), it's amazing how many people just let their kids go crazy at the park. Literally, I feel like I'm going to have a heart attack, especially with 2 year old Hudson. Their mama (yes, our daughter) just lets him do it all, and I'm talking huge slides, areas with sliding poles (open sided), etc...and yes...he does fine. It's all the other kids that push and shove that I worry about. About an hour into it, I'm trying to talk everyone into feeding the ducks! As much as I don't want them to grow up...it'd be nice if they were a little older while at the park!
Sooooo...some good news Sisters!!!! Megan is 8 weeks along now. She's been a bit sick in the am, which makes us happy! So keep the chants coming..working, for sure!
And...I got good news at my onc meeting on Wednesday! I asked her why I wasn't having scans last week, since she had said they'd be done between 6-8 weeks after treatment started. She said with the results of my tests from the week prior, she didn't think there was a reason to do them. Then she showed us the graphs that show my tumor markers, liver enzymes & the 3 other liver tests were all normal! My onc is cautious but she was very happy to say it was all good!!! She said the meds are definitely working. We were ecstatic! I think God's hearing our prayers & he's blessed me with the good news! It cleared some of the sadness away that I find creeps into my head on occasion! I was also given the lists of people in the school district who've donated leave to me...omgosh. They said enough was donated to get me through the end of the school year (end of June), and beyond, so they returned some of it. I spent lots of time crying over that...dozens of the teachers and staff members at my old school and others in the district office where I work now donated. I said I try to go back on March 28, depending on what scans said. Now, when I think of returning, I think of how stressful it is, getting up at 4 am, etc. I'm torn. Tom's now excited about my going back...he said what if I go back and my counts show movement upward. Will we think it's due to stress???? I know he has a point. The onc said once a person's diagnosed stage 4, she thinks it's time to give up work, but she knows not everyone feels that way, or has the luxury to do it. So....a decision to be made...soon.
Hope your daughter's trip was amazing JANE! And I'm jealous of springtime in San Diego PATTY! And oh, how I hope you're not snowed in BARB! The weather on the other side of this country has been CRAZY!!!! Our SIL is going to have to be on "squestration" time off. I'm not really into making a fuss over screwed up government but, it's starting to make me a little crazy. I'm just glad Tom retired when he did!
Love to ALL!!!!
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Hello SOSisters... sorry it's been awhile since I've posted. Busy, busy but that's good right?
VickiLynn - I'm so sorry to here about your friend. I have a neighbor who was just diagnosed. This stuff is never ending. Don't know if I shared but I went for my mammo about 3 weeks ago. It was suppose to be my last semi-annual, moving to once a year. Received the results, there is some calcification so we will continue with the every 6 months for awhile. How are you and Don doing? How are you two dealing with his MS? Is therapy helping?
RonnieKay - wow, yipee! I love your test results. I am so thankful that your results are staying good. We will not quit chanting. You don't ever realize just how good people are until you really need them. We can also give our vacation time to co-workers in need. I know you must be overwhelmed at the outpouring of goodness you are receiving right now! And now a baby on the way, I'm so excited for you! Wish we had a little one around to borrow for awhile and then send home! DD had a wonderful time on her cruise. Already planning the next one - wants to go for longer. I am counting down the days, 54 to be exact. I am so ready to go on vacation.
Take care everyone, wish y'all would post more often but I know we are all busy. Thoughts and prayers are with you!
Jane
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On my way to buy a gift for a wedding shower - ugh - can't believe these gals put things on their registry for $400...holy smokes. I'm getting salt & pepper shakers & napkins...am I a cheapskate or what!!!
I'm just thinking of my sisters & hoping you're all well! And Jane...darn calcifications!!! I'm glad they're keeping you on the 6 month schedule, good monitoring that way. Did they notice the change right away or did you have to go back for more views? Just so glad they're being proactive.
Well...my stupid tummy bulge turns out to be a tear in the fascia when they stitched things together after diep flap. Happens very seldom-only to me. PS said it's an easy fix-if you're not on chemo...which rules out fixing it anytime soon. So...keep up the chants for liver tumors to disappear!!! I have some pain so it makes me a little irritable. I've had the bulge from the beginning and they always said no worry. Guess it just got larger & they were able to feel the tear. It could've been fixed in my stage 2 surgery in November if they'd diagnosed it then. Just a little po'd right now. Gotta get over it though, doesn't help to be upset. Gave notice to the school district that I'm not coming back...so am able to use my donated leave - you're right, Jane...have been so blessed by so many....my SISTERS too!!!
Happy Saturday to all...hope the blessings of Easter are coming alive for you all!!!!
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Hello SOSisters.... Been busy with fashion shows. One for the American Heart Assoc to promote Go Red for Women and then yesterday for American Cancer Society and in two weeks Relay for Life. Met many cancer survivors yesterday from 8 months to 23 years survival. It's amazing to hear all the stories, both heart and cancer
RonnieKay - can I be po'd at your doctors too? Don't be discouraged, you have all of us praying and chanting. How is the chemo going? Side effects? Yes I was a little bummed about every 6 months for the mammo but got over it. She took about 10 slides when I went, looked at them and did two more. I am going to trust they know what they are seeing and doing. The alternative is another biopsy and I don't want to borrow trouble. Only 35 days till cruise. Hopefully Carnival will get their act together by then
How are the rest of my sisters doing? Miss seeing your posts and knowing all is well. Take care. Thoughts and prayers are with you
Jane -
Hope my sisters had the most beautiful Easter! It was a spectacular weekend here, sunny & warm & full of hope! Hank put his arms around me, squeezed me tight and said, "Seriously Grandma, this is the best day of my life!" Of course, he was probably talking about the egg hunt & presents....but I choose to believe it was that he loved church & all of us being together, loving life!
Jane...26 days & counting! So excited you get to "get away!" No worries about Carnival, they know all eyes are on them now! You're going with your daughter, right? It sounds like so much fun to be involved with all the fashion shows...and for such good causes. This weekend will be another busy one for you...bet Patty's getting ready for the wedding season too!
Wondering how everyone's doing. It's a busy spring time, I'm sure. Hope you're enjoying seeing grass grow where snow was piled, Vickilynn, and that Don's feeling good. Have to think that warmer weather will be good for him!
Barb...Michigan teams were crazy good at NCAA tourney...bet you were just lovin' it! Still a chance for a championship. Our team, Gonzaga, sure fell apart in their 2nd game. One of our best players, Gary Bell (a great kid from the high school I worked at), got injured & didn't play so I'm sure that didn't help, he's a defensive maniac. Hope your cherry trees are blooming. Ours are...henceforth my eyes are itchy & swollen...bring on the claritin!
Gill...we're comin' over the mountains this weekend. My uncle turned 90 so there's a huge celebration with all the family...it'll be crazy. Since our house is across the street from the church, where the party is, everyone will trickle over & we haven't been there for 3 months. We're going Wednesday and I'm sure I'll be vacuuming all sorts of dead bugs, spiders, etc. and dusting like crazy for Saturday.
Had my 4 week appt with onc yesterday. It couldn't have been better! ALL of my tests, tumor markers & liver function are NORMAL!!!! They've been really good & way down, but now they're at the low end of normal. Onc said that she's NEVER had tests be this much improved this quickly...she's amazed. When I told her how upset I was about my stomach bulge and the PS said I couldn't have it fixed while on chemo, she said she'd give me a break from chemo for a few weeks so that I can get it fixed. They're still not doing scans because with the tests being so positive, there's no reason to scan. I didn't realize some of the tests show bones are fine, etc. We're just SOOOOOOO happy! God has plans for me, that's for sure!!!!
Daughter was 12 weeks along yesterday...chants still accepted for healthy mama & baby!
LOVE to ALL!!!!
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RonnnieKay - fabulous news on your test results!!!! Hope you have a wonderful weekend when you head "over the mountains".
We are having a few days of beautiful weather - the sun is shining, it feels warm (though only in the 60s) and the college kids are acting like it's summer -shorts and flip-flops!
I am off on a trip to England in May to see my family - try to go every year now - none of us are getting any younger - and my Mum won't travel here anymore, so it's up to me.
Hope everyone is well and that spring has sprung.
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Hello SOSisters.... home with the flu. Thought I had a sinus infection, went to doctor, tested positive for flu which I have now shared with DH!
Ronnie Kay - I am so happy about your test results. They are wonderful!!!! We will keep praying and chanting. When will you go off chemo to have your surgery? Jim and I are going cruising, daughter went about a month ago. So ready for a vacation and hoping we will be all well and brimming with energy by time we leave. I think it's like 25 more days, getting close. We had a quiet but nice Easter, wasn't feeling to perky, now I know why. First time I have missed work in 12 years minus being out for chemo!
Gilly - I'd love to go back to England, I really enjoyed our 3 years we lived there. The people are wonderful, the countryside is beautiful and there is so much to see and do. Hope you have a good visit with your family, glad you are able to go.
Okay Vickilynn, BarbAnne, Patty, Neece - you know we worry about you when you don't check in. Please do a short post so we know you are okay!
Take care. Thoughts and prayers are with you.
Jane
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Oh Jane...the FLU!!! Did you have your shot??? I never wanted to get one and my doctor forced me to just before my first bout w/bc. Then I was glad that was one thing I didn't have to worry about. Now I get them every year...had a reaction this year, w/a slight fever the day I went in for stage 2 diep surgery. Anyhoo...hope you're feeling better. Nice of you to share with DH
Did you miss any of the shows you were planning? That would be sad! What do you gals think about the shingles vaccination? I'm sure we all had chickenpox. I know some people who've had shingles and they say it's miserable. Just don't want to deal w/the vaccine! Excited for you cruising Jane...and I was thinking your daughter was going with you two. Guess it'll be a romantic trip for you & hubby!!! Gilly...Great you're going to see your family in May! I have a friend from England and I love when she talks about her Mum! Will you take the whole family? Did you have your children in the states or are they English boys? We had a marvelous time in Endicott. We had nearly a hundred cousins there for my uncle's 90th! Lots of 4th & 5th generation Morasch (maiden name) kidlets too...it was wonderful. People always ask if I know my cousins, since there are so many....and I know every one and most of their kids. Great to be a close family! I had one mini-meltdown but it just meant I went upstairs for a 2 hour nap while everyone ate dinner (which I made) and did the dishes! It was excellent "planning" on my part!
I'm wondering about our girls, too! I know I always type way too much so if anyone's dreading having to read all this...please tell me & I'll shorten it up
You're all just so much a part of my life & I feel like I want to share everything with you....and I want you to share everything with me Even though I'm not supposed to lose my hair on Navelbine, it's starting to fall out. Onc was furious when she saw that I'd had it colored since seeing her a month before. I told her the chemo nurses checked with the pharmacy and they said it'd be fine. She said not to ask them anything...ask her! She said the chemo's harsh and dye's harsh so I may have hair loss. Sure enough...it's thinning. I'm so upset. Then I think of my positive tests and think that I may just have to deal with it & move on. I may get a shorter cut so that I can just wash & wear. Trying to let it air dry & then I use the curling iron, but would like to not have to curl it & since I have a little natural curl, it may be ok. I figure the less trauma the better & I fully expect it to come back as the hair dye chemicals weaken in my system. Glad I chose not to give my wigs away. I actually had family say that if I lost it again, they thought my wig was really cute!
Happy Wednesday...off to the shower & infusion
Love You All! -
Hello SOSisters..... recovered from the flu, DH still has a cough but getting better. Spring has come to NC and everything is green with pollen. Lots of allergies going around.
Ronnie Kay - yes I did have a flu shot. Have been getting them for years. When I told the doctor that it couldn't be the flu, he said flu shot only covered 3 strains, I had the 4th. My GP wants me to have the shingle shot. I haven't yet, but I have known a couple of people including my mother who had the shingles and it's pretty miserable. Maybe later. I'm so sorry about your hair! So what color will your hair be without the hair color? I have threatened for years to let mine go, I would be completely white but DH says not yet, when I get older (ha). I can see where the chemo could effect the chemicals in the color. I bet your hair will look cute if you cut it and let it curl!! I so envy you your big family. I have 2 cousins left- that's it. No aunts, uncles, sisters, brothers.
Where is everyone? Starting to worry about y'all. Please post so we know you are okay.
Take care. Thoughts and prayers are with you.
Jane
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Hi everybody! I can't believe I haven't posted in over two months. I think of you guys so often that I always feel connected, but that doesn't excuse not posting. Shame on me.
Ronnie I am just delighted with all your good news. Seems to me you have a long, busy life ahead of you, girl. But, geez, you have the absolute worst luck. I hope your ankle is better and the "bulge" gets fixed and your hair hangs in there. Sometimes when I'm messing with my real hair I kind of get nostalgic for my wig. I got so many compliments on it and it was so easy.
I'm so sorry to hear about your husband's DX, Vicki. As you say, it is good to know what the problem is, but the MS is tough. Maybe the nuerologist will have some meds or something that helps? Let's hope.
I'm glad you are over the flu, Jane. I got my shot this year but my ONC told me the vaccine is only 60% effective. He said the next best thing you can do: wash your hands many times a day. But, of course, I don't wash my hands any more than normal. I too have been thinking about the shingles vaccine. Two people I know got shingles in their EYEs, for heavens sake, and were absolutely miserable. Then again, another friend got the shot and had a terrible reaction and ended up at the doctor's office. I hope you have a fantastic time on your cruise.
Gil, have a great trip!
Neece, congrats on the new baby!
Barbara, maybe someday you'll actually get to take a vacation! Poor baby.
Things are good around here. DS successfully transitioned to the public high school he had his heart set on. He's making new friends, going to dances, getting great grades and generally doing extremely well. He has also suddenly fallen in love with MONEY, so all kinds of chores are getting done by him with a happy heart (as long as I pay, of course!). I'm lovin' this. He's also learning to drive. Sheer terror. I may be wearing my wig again just to cover all the new grey hair this is causing. I'm healthy as a horse except for one poor wisdom tooth. A crown fell off it in December, so I had that replaced. Then it started "twinging", so I had a root canal on it this week. I'd just have the damn thing pulled (who needs wisdom teeth anyway?), except I've now invested a fortune in it. Oh well.
I promise to stay in touch more frequently!
Patty
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Oh my! Absolutely NO excuses for my rude behavior! Just caught up on everybody's news (which is now "olds")...
My friend just had her mastectomy last week, but thankfully her lymph nodes were clear. Glad to read of your good reports Ronnie!
Yep, all the snow finally left a few weeks ago... it was good to go pull weeds and dig in the dirt, but then I must have uprooted something - because I am reacting as if I have a bad allergy to whatever it was!!! I didn't grow up having allergies, and I wasn't very sympathetic to those who had them ---- now I'm understanding!
Shingles - been there, done that. I was 52 when I got them. I was so miserable... for at least 3 months. I discovered what they were too late for any treatments other than calamine lotion and soaking in the bathtub. I don't know about the vaccine... I don't like vaccines at all (except polio which was an amazing thing - taking sugar cubes), as it seems too many have adverse reactions to them. I don't even get the flu shot - though I guess I will someday.
Anyway. Shingles. Here's my advice: avoid them.
A teen driver? Oh my, Patty! Glad he's happy and helpful (even if you have to pay him to be!).
Looking forward to reading all about the cruise, Jane!
Didn't see input from Barbara either. What's up with us???
DH finally got in to see a neurologist, who of course, wants to test and re-test and eliminate other possible causes. At least this time he's hanging in there with the tests and not giving up. It's a 3-hour ride to see the dr. but we get to stay with our kids and that's always a good thing - and it's on the coast so I get to visit my favorite beach : )
Forgive me for not keeping in touch. Life is.... isn't it?
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Hello SOSisters.... hope this finds all well. We sure aren't posting much these days. I know, I know, we're all busy.
Patty - glad to hear DS is enjoying his new school. Sounds like he is doing great. About your wisdom tooth. I had one I babied for years, spent a fortune and of course, ended up having it pulled. I never realized how much it bothered me until it was gone! Grandaughter is out driving right now, 2nd lesson. She is more careful than grandson, but she wants to drive more than he does.
VickiLynn - so glad things the snow is melting. Yes, I'm the warm weather person. Glad Don is finally getting the attention he needs. I hope the neurologist can find something that will help. Glad your friends lymph nodes were clear.
To all the rest of my sisters, hope all is well. Please post when you can. I leave tomorrow for our cruise, I will share details when I get home.
Take care. Thoughts and prayers are with you!
Jane
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Just checking in to say hi everybody! Ronnie...what's the news girl? Will you get to stop chemo since the tests are so good? I peeked into the Navelbine board and saw that your eyes are too dry and your nose too wet. I had weepy eyes and a runny nose the first time around, a daily Claritin ( recommended by the ONC) helped. But it might dry your eyes out too much.
Spring came but now we have the Marine Layer (read: fog) so it looks wintry. Have a good week everyone!
Patty -
Dang it...missed telling Jane to have a great time...like she needed my permission...LOL!!!! Have another 1 month pow wow with onc tomorrow & from what I see on my tests from last week (I have the full panel the week before onc meeting & they're posted on the website on the 6th day so I get a sneak preview!). I'm expecting her to be happy again! My ps says he doesn't want to fix my tummy bulge and risk my health being compromised again! UGH....will definitely talk to onc about it again.
Patty...I know what you mean about always feeling connected...it's the truth. I'm on about 4 different topics on bc.org now...one an exercise one, the navelbine, one about perjeta & ???? but, ours is my "home!" The stage 4 topics are sometimes difficult..but it's the real deal when you're faced with this diagnosis. I am so lucky to feel pretty darn good...thank God. Most of the time, I can be engaged in not thinking about cancer...but other times, it's all I think about. It sucks...cause it never occupied that much of my time before. I filled out all my disability paperwork...that was interesting. Name all your illnesses, injuries in the past 5 years...OMG, I had to use another sheet of paper. I wish they'd have asked about the first 54 years of my life...it would've looked empty! I still think of your Mama & feel like time is on my side! I'm using Tom's drops in my eyes & if I remember often enough, they feel better! The nose...I carry kleenex everywhere! I take my claritin when I have my neulasta shots and I've had almost no pains the past couple shots...just a tight squeeze her and there to the ribs.
I'm happy life is good with your darling Son! I remember our son taking driver's training with a private company when we lived in Poway. They always drove to Pacific Beach to scope out the bikinis! SO GLAD you're healthy...aside from the wisdom tooth! Who let you keep them...or better yet, pay to keep them in your mouth!!! My dentist, for 10 years, told me I should think about having them pulled and one day I got the most horrid headache which he said were from my wisdom tooth...so, out they came. It was the best thing ever!
Vickilynn...Hoping they find what makes Don feel good...knowing what you're dealing with makes that so much easier to do! I didn't have allergies growing up either, but it was like the day I turned 40-bingo! Plus, we lived in Oregon, which they say is a hotbead of allergies, something about the hemisphere blah, blah, blah, ..... Anyhoo, getting to see the kids on your way to doctor appointments has to make them much easier to face! Megan is now 16 weeks pregnant & all is well!! An October 14th baby...and they're not finding out the sex...rats!
BarbAnne...where are you Sister??? And Gill...I know you've had some harsh weather lately...time to start warming up! If it's nice in Seattle, it's surely going to be nice on the "east" side!
We're going to Long Beach the end of May...DS & DIL are going to Tahoe for a wedding & we get Josie (who at 5 just lost 2 teeth!) all to ourselves for 3 days! Have to tell you something funny..DD dropped the boys off early last week to do some orchestra work, Hank 4.5, came into my bedroom when I was getting dressed & said, "Grandma, when are they going to put your nipples back on?" How hilarious is that!!!! I said, "they look pretty weird, don't they?" He said YEP...and then merrily ran out of the bedroom. Grandkids are just the best!
Love to all....have a great week & they better be treating you like a Princess, Jane!!!!
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hahahaah....little Hank missing your nipples! The little ones are so great because everything is pretty okay...nipples,no nipples, whatever.
Ronnie, I'm so glad the chemo is treating you kindly, although I can't imagine it is any fun. Chanting for only positive news at your next checkup! I was shopping today with my little 90 year old mother. 10 years after liver mets and she is still going strong. Your story about the paperwork and your long list of illnesses reminded me of the nurse filling out paperwork when I was being prepped for my breast surgery. She asked "Do you currently have any illnesses?" I said "You mean other than cancer?" We had a little chuckle over that dumb question,
Vicki, Here and Now, a program on NPR, did a segment on new advances in managing MS yesterday. They mentioned an article in Scientific American that apparently outlines the new "treatments". If you got to Www.hereandnow.wbur.org, the link to the story is still up there under "popular stories".
I hope Jane is lying on deck chair sipping a piña colata!
Patty -
Yep... wishin' I was on that beach with Jane!!! But I am enjoying a beautiful Spring Day... birds singing outside, nice breeze, sunshine... wait a minute! Why am I sitting here at the computer!!!
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AHHHH...another cute picture of you Vickilynn! It's one of those beautiful days here too...so I'm on my way to lunch w/Megan and then a walk (after we find her a cute maternity something or other!).
Wanted to give you all the latest onc news!!! On Wed, she said that my scores went even lower (beneath 0....and Tom was concerned that wasnt' good...she assured us it's better than good!!!). SOOOOOO...big news is that in July (6 months of treatment), if scores & scans are good, she'll take me off navelbine and just keep me on herceptin and perjeta, every 3 weeks...HALLELUJAH!!!!! No every week visit & no chemo sounds like a winner to me! She'll still check my blood every visit & if she sees a spike in numbers, we'll start the navelbine again. She alluded to the fact that they don't lie dormant forever, but we'll take the good time as long as we can!!! YEAH!
Love you all...and off we go!
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Hello SOSisters..... yes, I'm home and I too wish I was sitting on a beach having a drink (maybe several drinks). So last year when I went on vacation I broke my arm and DD had a ruptured appendix. This year ....... got on the ship on Sunday, late leaving port. DH and I go down to dinner and he says he needs to get out of the room. It was packed, hot and the ship was rocking. So we go back to our room and he still isn't feeling well. He's thinking it's the motion of the ship (I didn't think it was much of anything). So we pretty much stayed in the room for the evening. The next morning, he says he can't stay on the boat, just doesn't feel right. So we disembarked in Key West (cost of $600.- that's another story). Got a room at the Marriott hoping he would feel better when back on land. Didn't happen. So I got a cab and off we went to the ER. Turned out DH was in artrial fillibration! He spent that night and the better portion of the next day in the hospital. I also spent 95% of the time at the hospital with him. The doctor got him stable and said he could fly home only if he immediately saw a cardiologist as soon as we got here. So we got home on Weds. Thursday am found me on the phone trying to get him an appointment, dealing with Carnival about the $600.00 and the travel insurance agency. We thank goodness had purchased the insurance, they will reimburse almost all the costs of the cruise and flights. Got in to see cardio dr Friday am. DH is on a blood thinner and new heart drug. In a few weeks after his heart rate has become more stable and blood thinner is working, they will go in and shock his heart to see if they can get it back in rhythm. I AM NEVER GOING ON VACATION AGAIN! I am so thankful we got off in Key West, I hate to think what would have happened if we had been at sea. So we are glad to be home. Would we go on another cruise? No, but it is only because of this experience. I'm sure it would have been fun. I would like to go back to Key West and see something other than the hospital and WalGreens.
I will catch up with everything else later. Just wanted you to know the ship didn't sink.
Take care. Thoughts and prayers are with you!
Jane
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