Chemo Starting Sep 09
Comments
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Jeez Jane, I don't think we should let you guys go on vacation again...too hazardous for your health. I hope your DH is feeling better and that you get all your money back. I see two lessons we can learn from your experience: 1. Listen to your body (DH could easily have chalked it up to motion sickness, and 2) Always get the cancellation insurance!
Hooray for Navelbine!!! I am so delighted by your excellent news Ronnie (although I have been secretly totally sure that you would beat this!). I am convinced that the Femara is what has kept my mom's liver clear for so many years...so damn the side effects (frankly I don't think I've had any) and make that little yellow pill your friend. So exciting to have the new baboon the way... what? How did baboon get in there? I started to type baby and my iPad decided baboon was what I meant. Good grief.
Vicki...such a great pix. You look so young! Life must be agreeing with you.
Patty -
LOL...Patty...I love when spell check makes crazy funny changes! A baboon would definitely be interesting
I was taking that little yellow femara pill 
and I didn't have the crummy side effects either...wouldn't ya know! I was going to give the bottle I had left to my girlfriend when onc said to stop taking it w/this diagnosis, but she said I may still need it. My guess is that it'll be expired by then!Oh Jane...I just can't believe what happened!!!! You definitely had someone looking over you, I probably would've told Tom to tough it out, by golly, but then...I don't think we've ever bought travel insurance!!! Guess we'll rethink that if we ever go anywhere besides to the park!!!! Hopefully his heart will get all straightened out..quickly! It had to be a scary situation! My guess is that Key West doctors have lots of experience with heart issues...being a retirement mecca...much better than cruise doctors!!! Take care of you too, Sister!! XOXO
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Hello SOSisters..... DH doing pretty good. Goes tomorrow for first blood test. If you could chant between 2 and 3 I'd appreciate it. He seems to have more energy and his color his better. I went back to work on Monday, was good to be back.
Patty - it is so true that it's a good thing DH listened to his body. I shutter to think what may have happened if we had been at sea. And yes I'm glad we got the insurance, waiting on a few more statements and forms to file our claim. Agent said we should get 95% back. I'm putting it back in the bank, no more vacations! How are you doing? Is DS excited about school getting out? What wonderful vacation plans do you have for the summer?
RonnieKay - I am so so thankful for your news. Patty is right, we will keep on chanting. How are you feeling? How's the chemo going? Your Hank sounds like quite the bright young man. Don't you just love grandkids? Know you are excited about the next one. Any news leaks on the sex of the baby yet? How are you adjusting to not working? Everyone I talk to says they don't know how they got anything done when they worked because they are that busy being retired. I'm not ready to retire yet, I think my job keeps me young and I really enjoy my job.
VickiLynn - I love your new photo. Know you enjoy visting those grandbabies. How is Don doing? I so hope they will find something to help him be better. Glad your snow has melted, you know me, the warm weather gal.
To all our other sisters, hope you all are doing well and enjoying spring/summer.
Take care. Thoughts and prayers are with you!
Jane
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OK SIS!!! There was a reason I logged on (when I should be vacuuming because sister's family decided YESTERDAY to come over the mountains, from Gill's neck of the woods, to be here to celebrate Mom's Day with the rest of us!) and I see that DH is going in for tests...our time, that will be at 11:00 am and it's 10:15...so I'm starting early with my chants!!!! Love You and hoping for great tests...good to know he's feeling better & hoping, praying, chanting for the BEST NEWS!!!! XOXO
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Happy Mother's Day everyone. Hope you have a wonderful day!
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Happy Mother's Day, ladies!
Love, Patty -
A week later, I'm hoping you're all still being worshipped for your Mothering
JANE...sending love & healing hugs for DH & his Girl Friday (I prefer that over Nurse Ratchet!!!)
PATTY...just saw the email you sent after you, Vickilynn & I had lunch...when your girlfriend said we all had normal hair
Made me miss you guys...and my "normal, wacky curly hair!" VICKILYNN...hoping you're playing games, playing with Mr. O'Riley and enjoying life...I ate clam chowder for you today (and I'm still burping...lots of sour cream, I think...we actually watched a BIG fellow eat 4 bowls!!!!).
I'm hanging in here...doing lots of walking, since that's about all I can untill this tummy gets fixed. I was a little taken aback this week when I went for treatment & SURPRISE!!!! My white count didn't go down enough to postpone chemo. It's really a good sign that my counts were good, but my onc decided to go ahead with chemo...making it 3 weeks in a row. She was changing my orders to 2 on, 1 off...but since counts were good...went ahead with it. I was pretty upset...since I've never had it 3 weeks in a row. I've felt almost normal having the week off and this set me in a tailspin...probably more emotionally than physically, although I did feel a bit more tired, mouth sore, etc. I sent an email asking why and now kind of regret it. I'll see if I'm on her "pain in the ... patient list" on the 29th
Alas...I'm sorry I'm still burdening you with the big C....that's what family's are for... LOVE YOU!BARBANNE...don't make me come find you!!! How are you doing, baby sister????
GILL...going across the mountains next weekend...this summer when we're there a bit longer, I'm going to give you a ring!
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Ronnie, I completely understand why having an extra round of chemo would leave you unsettled, upset, and...well..downright P.O'd. Those ONCs are downright cold hearted. 'Course they are also trying to save us, so a bit of cruelty my be excusable if she is knocking the socks off the cancer! I hope you don't feel too awful and that you definitely get this week off. Hang in there!
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Hello, it's nice to see a group keeping in touch. Ronniekay, that would be lovely to have contact with you! We will have to PM phone numbers. I am in England visiting family at the moment.
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You're right, Patty! Onc sent an email saying chemo every week was always in the plan, counts permitting, so she felt, in her heart of hearts, that I should have it. She said it was a good thing counts were up. So it better blast away, cause hopefully July she'll say "Time off for good behavior!".
Hope you're having a wonderful family visit, Gill!
Still sending hugs to all!!!!
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Wow! Disrupted cruises, sisters having chemo, people with actual JOBS, and visits to England... it's been quite a month!
My friend here - 2nd time around (first one 9 years ago) - decided to have breast reduction surgery at the same time as her mastectomy on her other breast!! I couldn't believe it. She is SO miserable with pain on both sides. Remember the "stupid things people say" when you have cancer? She got a new oncologist, highly recommended, and the first time he sees her after her mastectomy is: "well, if you have to have cancer, this is a good one to have!"
She said "I wanted to say - when is cancer good? I just had a breast removed..." Then, he never even once examined her surgery scar! I told her to find another dr. She was glad to hear that her tumor was small and contained and no sign in any lymph nodes.
DH is experiencing more symptoms... not fun thing to go through. He will have to step down from his position as Pastor here soon. The good news is we're looking at moving to the coast : ) and I can have clam chowder on a regular basis! Extreme temps (like our frozen winter and HOT summers) are not good for MS patients.
It seems that Social Security doesn't count all the time I've spent self-employed, since we listed it under DH's name! So if I were to apply for S.S. (I'll be 62 next May!) I wouldn't have enough to even pay rent! So my thought is to get a job and earn some more $$... what a concept.
HAPPY BELATED BIRTHDAY to Patty and Me : )
I am still exercising with friends ---twice a week low impact with a video and once a week line dancing with our 90 year old instructor! Talk about motivating! Gloria just keeps on moving and dancing and doing great. She's inspiring. So physically, I'm doing well. I do feel healthy - though continue carrying too much weight.
Not looking forward to moving, but it's a necessity, and if I have to move anywhere, it's right where we're planning to be - on the No. Calif. coast...
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Hello SOSisters.... hope this finds all of you well and ready for Memorial Day. My weekend to work so I'll have to wait and celebrate 4th of July
DH is having quite a time, lots of adjusting of medication, lots of doctors appts - you know the drill. Hoping that something is going to work soon, they will probably shock his heart within the next couple of weeks.RonnieKay - I'm sorry you have to do more chemo! Please know that my thoughts and prayers are with you when your sitting in that darn chair. But if the chemo is doing good things then it's meant to be. What are you doing for the weekend? Any fun plans? How are those grandbabies doing?
Patty - hope you and DS are having a good weekend. Is he out of school yet, grandkids are out here on 6/10. Can't believe grandson is graduating, where does the time go? We are considering getting him a junker to drive back and forth to school and work. All of us in the family had a junker for our first car but if it has four wheels and a radio then that's all you need.
VickiLynn - I'm so glad you posted. We've missed hearing from you. So sorry to hear that DH isn't doing so well. Where on the coast do you think you'll live? The coast sounds exciting to me. Will you be close to your son? Social security has all sorts of rules and regulations that make no sense. If I want to get a decent check, I need to work until I'm 68! That is so wrong!
Gilly - hope you are enjoying your family vacation. How's the weather over there? So awful about the policeman. Nowhere seems to be safe anymore. I remember when we lived in England years ago how we walked around in London and Oxford and never thought a thing about safety.
Wonder where BarbAnne and Neece are hiding? Check in ladies, we miss you!
Take care. Thoughts and prayers are with you!
Jane
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OUR MAY BABIES!!! Happy, Happy Belated Birthday Wishes for our Sisters!!!
Jane...hope they get that heart shocked into working JUST RIGHT! Sorry your life is back into dr appts being the norm
And Grandson graduating...holy smokes!!! Where is he going to go to school? Nowdays, they don't need a working radio in the car, they have their I-anything that gives them instant tunes! Tom read an article that they sold less cars to the 16-25 age group than ever before last year. They think it has to do with the young set being "in touch" through social media....they don't have to actually drive to get together anymore. How weird is that? Patty...I saw you have a show coming up in June...some day I'd love to come & see you in action! LOVE, LOVE bridal shows!
Vickilynn...So great to hear from you...sad to hear Don's having more symptoms, but if it's the catalyst to get you where you ultimately want to be...so be it! Sometimes what you need is a good excuse! I so hope a warmer climate helps him out. If you do find a job, it has to be one you LOVE. I miss my job & mostly being with people on a daily basis, but your being a talented people person, I think you'll find something (if you have to!). We really don't know much about social security since Tom was "old government." He has that retirement so doesn't qualify for ss (never paid in). He worked a bit (teen & college) before being a g-man so part of the reason he's doing the UPS gig now is to at least qualify for medicare. I've been advised to apply for ss disability & I may do that. My tests last week were a little upsetting to me...everything's been going hunky dory and was so excited about the thought of going off chemo but it looks like some of my markers inched up last week (they do the full panel each month). I'm pretty sad...but I see the onc tomorrow and she'll explain. She's the one that said to not get too excited because levels can fluctuate, but even she was pretty excited. Bummer.
We had a Memorial Day spent at our home in eastern Washington, seeing friends & working non-stop in the garden. Since all this C stuff, we've hardly had a chance to go there (4 hours away...not far from Gill's Idaho). The dirt is the most fertile ground...wheat that feeds the world, garbonzo beans, hay, etc. When Mt. St. Helens exploded in 1980 that's where it deposited a big pile of ash...which made it even more fertile! Anyhoo....everything grows like wildfire...plants & WEEDS! So, we went in April and did much weeding in flower beds, etc. Went Friday...weeds were all back, looked like we'd never been there. We don't like to use chemicals (may cause cancer...HA), but boy, am I tempted. Anyhoo...whiny me! We leave for Long Beach in 2 days to stay with Josie and I need to get this place cleaned and laundry done so I can pack!
Love you All....thinking of you ALWAYS!!!
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Happy birthday Vicki,from your May birthday sister. Isn't it great being 61? No? At least next year we get in range of social Security. Ronnie, I think going on disability is what you should do. Your husband too, Vicki. You guys are what it is there for!
I took DS and two of his friends to three day rock/reggae festival in Monterey over the three day weekend. Not exactly my cup of tea but the boys had a wonderful time. I hope you have a wonderful trip to Long Beach Ronnie...and you too in the UK Gill. You and Ronnie really should get together...I think you two would get along great.
Try not to be too discouraged about the markers Ronnie...they bounce around. When my mother was being treated for liver mets it seemed like just when things were going well the damn markers would go up a bit. I swear if she hadn't moved to California her ONC in Denver would still have her on Taxotere! Stay strong. That new baby is going to be here soon!
Patty -
Hello SOSisters......Happy really belated Birthday to you VickiLynn and Patty! I know that somewhere in this house I have all of your birthdays written down so I wouldn't forget. Now if I only knew where I put them! Ended up in the ER Tuesday night, DH was having trouble breathing. I hate this darn AFib, they are going to try to shock his heart back into rhythm on June 11th. In the meantime will you please chant for a good blood rate so they can do the procedure?
RonnieKay - isn't it always something? Try not to be too upset with the markers, I agree with Patty, they can be erratic and then just fine. I don't know why you wouldn't apply for disability, you paid in all these years, might as well benefit. I sort of hate thinking that I will be able to apply for social security in a couple more years - I want to hold out until I absolutely have to retire, that way my check will maybe pay the electric bill
Hope you are having a great time in Long Beach!Patty - you should get mom of the year award. You are so open to doing things with DS, I hope he appreciates you! I would love to go somewhere. I'm actually on vacation this week, but it's filled with doctor appts, etc. Nothing fun. I actually had a little pity party and a good cry in the shower and got over it. Thankful that DH can be helped! Who needs a cruise?
VickiLynn - hope you and DH are getting excited about the new move to the coast. Know DH is disappointed to have to give up his position. Any chance he could fill in somewhere when you move? What did you decide about going back to work? You have such a zest for life, a way with words, there must be something you would like to do that you would absolutely love.
Take care dear sisters and have a good weekend. Thoughts and prayers are with you!
Jane
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Prayers and hugs for you, Jane!! I know the feeling of wanting to help your DH and not being able to do anything!! Trusting for God's best for both of you.
I think 61 was a lot easier than 60, Patty... 60 hit hard but 61 just sort of slipped through. Maybe it's denial?? I would have LOVED a Reggae concert! Actually, for about an hour... after that it gets pretty repetitive. Just love that rhythm : )
Ronnie - love you and praying for you. What more can I say? Focus, sister, focus.
There was a job with the schools that sounded interesting to me (elementary school librarian - part/time) but I had to take a "paraprofessional exam", which in California means Instructional Aide test. Took it Friday, and I was so encouraged because I thought my chemo brain would reign and I'd not be able to remember anything. BUT, I only missed 1 math question (Oh, when was the last time I had to factor polynomials???? 40 years ago +?) and 1 Language Arts question.
My DH said, "I was worried about how to comfort you when you didn't pass!" Just goes to show how ditzy I've been lately.
Anyway, I am now an official card-carrying paraprofessional. HAH! Take that chemo.
So now my DH says, "Why would you want to get a job? Why don't you go to school?" OK. I've taken college courses through the years but it only adds up to sophomore status... And I've never needed a college degree - so I say to myself, "Why not?" Wouldn't it be fun to get my AA at 62?
And in a moment of spontaneity and insanity I filled out an on-line application to attend a Community College on the coast!!!!
This morning, reality is hitting... but for now I'll just bask in the moment.
Yes, Patty, DH is on Soc. Sec. disability and only had a part-time job here. SS has been very helpful.
Now he wants to take Art Classes at college! He's actually an artist already - paints watercolors - mostly barns and landscapes - and I think he's quite good : )
... to be continued...
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Hello SOSisters..... well it has been a pretty mild vacation. Did go get a manicure/pedicure and facial. Mostly sticking around the house. DH will have his cardioversion on Tuesday at 8am. Please send lots of chants his way that this will put his heart back in rhythm. I am anxious for him, he feels so bad and there is nothing that I can do! My only cousin, who also had breast cancer, had open heart surgery yesterday. They had to replace a valve. Get this, the valve was damaged during radiation. The cardiac surgeon said he didn't realize how much scar tissue there was until they got in there. He is one of the premier surgeons at Duke and said this was definitely caused from radiation. Oh good, something else to worry about - please add her to your prayers.
VivkiLynn - wow, I'm impressed. I would have missed at least half of the math questions, and not so sure about any of the others. I think you would be wonderful with kids. You can tell the most amazing stories, you wouldn't even need a book!
RonnieKay - thinking about you and wondering how your chemo is going. We're all still chanting and praying for the best.
Patty - do you have a bridal website? I would love to see what you do. Any big plans for the summer?
BarbAnne, Gil, Neece - hope you guys are doing okay. Please check in every once and awhile.
Take care, thoughts and prayers are with you.
Jane
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Oh Jane....you know the prayers have never stopped! Hoping for the best results in DH's jumpstart for the heart tomorrow!! He just MUST be well
and prayers for your cousin. As if the radiation wasn't enough...ugh. I'm glad you had a chance to have a bit of pampering done. Youngest daughter's birthday was last Sat and she got facial, mani, pedi and massage cards. Honestly, it's so hard to buy for the "kids" cause they buy what they want....and it's usually a lot more than I want to spend...LOL!!! Oldest daughter's bday was yesterday and she got a trip to the salon for hair change & baby stuff....easy shopping this year! Anyhoo...hope it energized you a bit, dear Sis! Vicki...We have the same ParaEducator positions...but they're almost exclusively special ed classes (or 1 on 1 students). We never have enough substitutes for the ones that are absent (all the time!), so if it's the same in your district, maybe you could sub to get "people time," while you go to school. It would be extra $ too...because they usually pay parapros pretty well. I LOVE the school atmosphere & camraderie...minus the drama that sometimes exists but is easy to avoid
I actually looked up your web site, Patty...nice! I saw that you're having a show this month...right? Hope all is going GREAT. I love that you're so involved in DS's life and friends...keeps you young, I think!
I'm feeling ok...pretty tired with chemo every week. I had Hank & Hud all day today, Mama was sick. I can do whatever I need to do but sometimes am pretty wiped out. I think/hope allergies are playing into that too. We had a fabulous time in Long Beach, CA with Josie. She's a bona fide bike rider...as we ran alongside her cheering her on! Her mom & dad were pretty happy when they came back from Tahoe. She just started piano lessons (a really fun new method) and since I play, we had the best time & she's so focused. Actually learned Happy Bday and a few other easy tunes, but....OMG, do I sound like a grandma or what! Meg's 22 weeks along..YAHOO!
Tom said the salmon's on the table so I'm off to eat! So glad he likes to cook! LOVE TO ALL!
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JANE - prayers said for you and DH this morning...
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Do you know the results yet, Jane? I hope they can do something to help your DH feel better. I was sorry to hear about your friend damaged by radiation. It's crazy to think that something they use to treat cancer is the same thing that causes cancer and bunches of other dire problems. Poor Madame Curry died from exposure to her own discovery!
Congratulations on passing the test Vicki! Polynomial? What the heck is that? I learned this week that my sister is going back to school to get her Nurse Practioner degree. She is a RN with a Masters, so I don't know what the new degree will mean given she'll be 62 when she finishes it. But learning new things is always fun....right? Good luck to you and DH in your back to school adventures!
DS and his friends are headed the opposite way educationally...he went to three graduation ceremonies this week to support buddies at different schools. Better man than I, I went to one and called it quits. DS is a senior now. Where does the time go?? Before I know it he'll be off to college. Yikes.
Ronnie, I am so glad you feel well enough to live an active life. How fun to have all the little ones to hang out with. Our show isn't until the end of July, and we only have 18 booths left ( started with 200 to sell), so we'll be taking it easy this summer. Yeah! -
Patty...can't believe DS is going to be a SR...that's big stuff (and expensive...remember BarbAnne's last year????).
Jane...I'm wondering how DH is doing....and praying that you're not posting because you're out doing lots of fun stuff because he feels wonderful!!!!
Liver scan tomorrow...time to chant, favorite Sisters!!! XOXO
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Chanting for you Ronnie!
Patty -
Ronnie? Jane? Waiting to hear results - you're in my prayers.
Vicki
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Hi SOSisters... sorry it's taken me so long to respond. DH had his cardioversion a week ago Tuesday. His heart went right back into rhythm and we were so excited. But by Friday he was back in Artiral Fib and we have had two doctors appt this week. They have adjusted his meds and are going to test him for sleep apnea which apparently can put you back into AFib. Also, we are waiting for a referral to Duke, they have a doctor there that specializes in AFib. I need all of your thoughts and prayers, DH just isn't doing so good and I'm so worried.
VickiLynn - thank you for your prayers. I know you can empathize - I am so much better as the patient, then the caregiver. So do you have a job yet? Sounds like the school system might be the way to go.
Patty - it is hard to believe how fast our kids/grandkids grow up. Grandson is going to be starting community college until he decides what he wants to do with his life. Grandaughter in 10th grade. I don't know when they grew up - they should be little! I'd love to see your website if you'll send me the address.
Ronnie Kay - enjoy those grandchildren. They make you young and they are at the best ages right now. Sorry the chemo is making you tired. You just hang in there, it will get better.
Take care sisters, thank you for the prayers and chants.
Jane
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Thanks for the update Jane. I'm keeping your DH in my thoughts.
Any news Ronnie?
Patty -
Thinking good thoughts for everyone going through difficult times.
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Chanting love & hope, with a special dose of healing prayers to all
Find out tomorrow about scan....onc nurse couldn't give results but looked hopeful Thinking of you all & hoping the sun is shining where you are today XOXO -
Ronnie, I'm chanting like crazy for good results!
Patty -
JANE - Hoping to hear some good news about your DH
RONNIE - What are the results?
PATTY - Any more reggae concerts?
EVERYONE ELSE - I can't believe how poorly I've done at checking in with everybody!!
An update on my life: still not sure what we're doing.
DH went to his neurologist this week - going back for MORE testing in 2 weeks... a lumbar puncture (spinal tap) and another MRI. He is so claustrophobic he's already nervous just anticipating this test! But they sent us home with 2 very strong anti-anxiety pills to take that morning. That's the only way he'll even consider going into the "tube".
I'm looking out my window at a beautiful butterfly drying it's wings after flying through the sprinkler.
It's supposed to be near 100 for about a week here. Not liking that! But we do have A/C and it's a very dry heat - so no humidity to deal with thankfully. We've found that those with MS react to heat and so we have to make indoor plans. Missing a family reunion this Saturday because of the heat. DH just gets so weak after being out in the heat - even for a little bit of time. I'm thankful that we live at an elevation (2800 ft) so that it cools off at night... it's very pleasant to open the windows and breathe the clean, cool mountain air.
I'm in the process of looking for a new oncologist. Mine retired a year ago and the new one I've never met. Last year I visited with his nurse who was OK. But they changed my every 6 month follow-up to once a year! I'm not happy with that. My first onc. said every 6 months for 5 years as a follow-up.
This month is 4 years since diagnosis... I was revisiting my medical records and I'm outlasting their predicitons!
But Ronnie's journey has helped me keep in mind to be vigilant and that's why I feel the need for a new onc.
OK - time to move the sprinklers : ) I like the fact I get "misted" like the butterfly when I go out to move the hoses! Let's keep fluttering through the sprinklers and feeding on the sweet peas!!
love to you all. Vickilynn
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Very fast update as my family is all at the pool waiting for me! Scans say, "Significant interval decrease in previously seen metastatic lesions"....which on the graph, translates to 80% shrinkage. The onc was very happy & was a little perturbed that I didn't seen happy
I said I wanted them gone....she said txt is working, she's totally pleased, all my markers were the lowest ever and she's going to 2 weeks on, 1 week off for chemo (herceptin & perjeta the same schedule), so I am happy! That's part of this 3rd dx that's hard...I never looked on the "wrong side....dark side, I guess you could say" before, now it creeps in and I think it takes everyone by surprise....even me!!!Thinking of you all...and sorry it took so long for my response...got home late & not feeling well after Wed appt (waiting 1.5 hrs for onc) and yesterday was gone all day. LOVE & HUGS!
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