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  • Groovywilma
    Groovywilma Member Posts: 450
    edited May 2018

    Hello! You guys are so sweet and thoughtful checking in on me when I lag with replying. I always reply in my head! But when it comes to real replies, I like to use my laptop and then I have so much I want to respond to! European River Cruise: Do it! I went on a Rhine River Cruise in August 2016 and I enjoyed it very much! I had just started Gemzar and was slowing down a little. I thought a river cruise might be a good pace for me, and it was! Also, the river cruise was nice and smooth-- no sea sickness at all (I'm prone to sea sickness and got very sea sick on the Alaskan Cruise). My friend and I got a balcony cabin and it was through Viking Cruises. The trip was wonderful and the sites in Germany, France, and the Netherlands were so beautiful! I'm hoping to go on another river cruise soon!

    Lynn-- Really happy to hear that your scans were good and you'll be able to get more time on taxotere. Seems like you are tolerating it OK overall and if it's killing off the cancer, that's the best part! I'm glad you've got the energy for going out to meet some other Breastcancer.org friends for lunch today! Tell us how that was and I hope you remember to take a picture with them! The Mini's On Top sounds really cool! My sister drives a Mini and I told her about it. Does not seem to be that kind of get together here; or at least she hasn't seen anything about it. Maybe I'd have to drive with her to NH! Oh but that would be a really long drive!

    Lisa-- I'm so glad that xeloda is treating you well! I hope you continue to feel well and strong while killing off cancer cells! And you'll get to have your regular hair back! Woo hoo! Book that river cruise right away! Do you still get the watery eyes? Mine still water regularly (always need tissue on hand) but not pouring all the time. I'm glad you're using your energy sprucing up your condo and doing some projects! That's great! I'm looking forward to when I have strength and energy to do the same at my condo!

    OK, my update: on Friday I met with a palliative care doctor. She was very informative and helpful. We talked about the best ways to manage the symptoms that are bothering me most (swelling, shortness of breath). Since I'm in between oncologists (until the new one starts during summer) she will help be a liaison between all the other providers/ referrals that I'm working with. It was a good appointment. I'll resume chemo (carboplatin) next week. My platelets and hemoglobins have gone up in the last couple of weeks, so that's good news. This week I'm hoping to schedule with physical rehab to get compression socks to help with the circulation/ swelling in my legs. My new concern is the shortness of breath and if I am getting enough oxygen to all my organs. I asked about getting oxygen at home to see if that will help. I haven't had that before, have you?

    I hope you both continue to have good energy and strength to do fun and enjoyable activities as we approach summer! We can do this! Take care! Wilma

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  • Lynne
    Lynne Member Posts: 641
    edited May 2018

    imageHere's a pic from our luncheon today. Myself, another Lynne (who drove me), and Mary Jane (from ME).

    Wilma-Good to hear from you! We had a great lunch. We got there at 11:30 and did not leave until 2:30. The waiter came over 3 times to take our order. We were just yakking away! LOL It was about an hour ride for us, and an hour and a half for the Mainer. Beautiful weather, so no problems driving. I was the young one at 56. The other 2 were in their 60's (the one who drove me is 68, they certainly don't look or act it! LOL). Lots of laughs!

    I'm glad that you are able to see someone in between oncologists! Glad your blood work is better too! I went to an OT for my lymphedema, after my lymph node/lumpectomy, 13 years ago. It helped. I didn't need a compression garment. I had just noticed that my right arm sleeves were tighter than my left. It helped.

    I've never been on oxygen. I did have that thoracentisis when I was first diagnosed stage 4. It helped tremendously. I do take Advair (an inhaler) and ventolin (another inhaler) for my asthma.

    Good luck with your appointments! Hugs!!!

    Lynne

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  • intothewoods
    intothewoods Member Posts: 449
    edited June 2018

    Hi girls!

    I am slow to post (obviously) but you two are thought of regularly. I hope all is going well.

    Lynne, how wonderful that you met up with others from the site. Your plan to visit the coast on such a beautiful day sounds so lovely. I can imagine the three of you enjoying a great meal and comraderie! Nice :-) I got a total kick out of the drawing on eyebrows thing. I won't leave the house without doing it.

    I have never been on a river cruise, but did go on a three night Carnival cruise a couple years back. I had low expectations going in because that particular line seemed so cheesy. It was very cheesy and I agree about all your comments about crowded pools and store prices, but we enjoyed the excursions and I got a good sense of the appeal of cruises. Just book it, pack, board a ship and you are on vacation. I know the river cruise will be amazing. The ships are much smaller and we booked one that is a bit higher end than Viking (which I've been told is still amazing) and got a suite with a private balcony. We start in Basel and end in Amsterdam and will spend two extra nights there. Definately blowing through our travel budget for the year. I'll have my first scan since starting Xeloda a few weeks before we go in early July and no matter what that says we are going! So there, cancer! When is your next scan? And are you reading anything good? I'm reading the Harry Potter series this year and will finish book 5 this weekend. IAt 61 years old. Make that 61 and a half! I've been alternating a HP book with something else on my to be read shelf. Haven't decided what that will be, but I will probably take Harry Potter with me on the cruise since it is such a fun read even though these last few books are enormous!

    Wilma, sending you lots of love.

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  • Lynne
    Lynne Member Posts: 641
    edited June 2018

    Hi Wilma!

    I'm so glad you booked that river cruise. We've seen the Viking commercials, and it does look nice with all the rooms facing out one side or the other. Yes, go, whatever the scans show! I just had scans the second week of May, and all looked fine. There was some uptake in the rib areas on the bone scan, but they said it was showing the bones mending (probably since I broke them coughing so hard for a week, they hurt for a month!) and the CT scans looked fine, some shrinkage even. So sick of this chemo though. After a year, I'm done with these side effects. How's Xeloda treating you? I hope the hands and feet are too bad.

    We are going to our usual summer spot in NH, the last week of August. It's on Newfound Lake. We are renting a house on the water, and taking the old 77 open bow boat with the 78 engine. Still turns on the first turn of the key. It used to be his parent's boat, they bought a pontoon boat (I call it the party barge). At 86 and 85 1/2, it's easier for them to get in and out of. The sold there house here in their early 70s and put a foundation on, sided, an addition on the second floor, got a well, and heat, and made their camp on a lake their home. It's about an hour from our house (his 3 siblings live about a half hour from them), yet they always call my husband (the youngest at 54) for help. One brother is pretty useless, the other one helps a little, and his sister's husband's mother's house is next door (she recently passed, so now it's his and his siblings camp), and he's retired and helps some. My husband is the one putting in and taking out the dock (all 8 sections, shallow lake), by himself usually (sometimes our kids help), and does whatever they need whenever we go there. He also helps out my mother (who still lives in her house around the block), as does my brother-in-law who is also in the neighborhood. They both have honey do lists for them, they also snowblow for her. The grandkids mow the lawn and stain her deck for her too.

    In October, we are going for 2 weeks to the Mexican Riviera for our 35th wedding anniversary. We bought in to a place, 3 years ago (for two weeks, for 10 year plan) that has resorts mostly in the Domincan Republic, one in Jamaica, one in Mexico, and one in the Canary Islands. We've been to 2 in the Domincan, Jamaica, and now Mexico. We have to pay the all inclusive fee, which Jamaica was the highest, but so far my favorite. But you don't have to worry about your food and drinks (yes alcohol too). Only your excursions you have to pay for (which he will scuba dive, I will snorkel if I can go off the beach, which this one looks like there is a reef not far from shore, too hard for me to go up those ladders on the boats) We go someplace for our anniversary every year. I'll miss both breast cancer walks this year (usually I go to the one in my city, last year, it fell on our anniversary, so I went to the state capital walk, 20 min away, the week before, but the 2 weeks we are going are falling in the weeks we'll be gone).

    I usually read books my mother hands down to me. Nora Roberts, James Patterson, Dean Koontz, Danielle Steele. My daughter got me the first three Outlander series books. I've watched the series on tv. She said the books are better (as they usually are). So I read the first one, and have started the second one. They are 900 pages each, but very good. Of course I'm reading the stuff I've watched on tv. I believe the third book is where it will take up where they'll start this season. I don't read every day, and if I do, I'm in bed and usually can only make it through a chapter or two. I do read on vacation. I park my but in a chair under an umbrella, and read until I get hot then jump in the water. My husband scuba dives, so I'll do that. He'll sit for awhile and look at his ipad, but gets bored easily. I've never read the Harry Potter books (my 4 kids all have, they couldn't wait for the next ones to come out, back in the day), I've seen the movies though. I had bought the Little House on the Prairie and Anne of Green Gable books for my daughters, and of course I read them too, back in the day! Loved them! I find it funny that my younger daughter, the reader, is handing books up to her 56 (and 1/2 too, next week!) and my 80 year old mother is handing them down to me. More books than I can read right now! LOL

    Hope all is going well for both of you, and anyone else on here!

    All my love to you!

    Lynne

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  • Lynne
    Lynne Member Posts: 641
    edited June 2018

    Hi guys!

    Here are some pics from our weekend at Minis on Top. Thought you would enjoy them. We put 500 miles on our car. We went riding for the day on Fri and again on Sat. Beautiful weather all weekend.

    imageMy husband and I checking out the other Minis in a ski area parking lot.

    imageThe 8 Minis we road around with on Sat. This was taken in Stark NH. We have lots of covered bridges in the mountains. Our car is the red one in the front, Mini cooper convertible.

    imageThis was taken by one of the other Mini drivers. This is on the top of Mt Washington. The highest mountain in the northeast.

    imageSun setting.

    imageEnd of the day!

    Hope all is well with you!

    Lynne

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  • intothewoods
    intothewoods Member Posts: 449
    edited June 2018

    Love the pictures, Lynne especiallly of you and hubby Thanks for sharing them. The whole thing sounds so fun and funny. Minis on Top!!! I'm doing well. TM done this week and are down again and first scan on Xeloda is Monday. I'm going to be a two plus years gal just like you. I've been a whirl of activity lately. Almost finished with estate planning (what a pain in the arse) and just booked our excursions on the river cruise. Your anniversary in the Mexican Riviera will be wonderful for sure. Way to live with cancer my friend!!!

    I hope all is well with Wilma. I'm concerend we haven't heard from her for awhile.

    Hugs and love

    Lisa

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  • Lynne
    Lynne Member Posts: 641
    edited June 2018

    Hi Lisa,

    We had a wonderful time. When are you going on your river cruise? I bet you can't wait. They look wonderful. Yes living with cancer for sure. We have to enjoy whatever time we have left!

    I hope your scans come out great on the Xeloda, and you get more than the 2 1/2 years on it! Good to hear your TM are down. Mine have been going up a lot. My scan in May was fine though. They did TM again when I had my chemo, but did the wrong test. They wanted me to come in on my week off (my hell week), last week. I told them no and I was coming in next Fri (this Fri now) to see the oncologist and have blood work, they could do it then. You're not getting an extra poke from me (I had to come in the day before for bloodwork and to see the PA last chemo, because they couldn't find a PA spot for me on my chemo day, ridiculous!). I'm in charge now people! LOL

    I had thought that everything would just go to my husband when I pass. I found out from his sister (who works in a bank and does classes, one being wills, etc,) that if we don't have a will, it will go through probate. I guess we'll have to talk to a lawyer and get that all squared away. At least we know now, and not later! All we have left (other than that) is our headstone and I have to write my obituary. I want it all done, so my husband and kids don't have to make decisions at a sad time. My mother, 3 sisters, and I had to go to the funeral home for my father (he died suddenly 13 years ago at 68), and she didn't know if she should cremate him or bury him. She kept asking us what do you think. This went on for an hour. I finally said, what did she want for herself. She said cremate. Well we ended up showing him at the wake in a rented casket. He then went to the church, and then back to the funeral parlor for cremation. She then kept him on top of the tv. One of his friends passed a month before, and his wife called her and asked what she did with Jack. She told her he was at home. His wife said she buried him in a cremains area with a headstone. So we checked it out, and that's what she did 5 months after he passed. Our plot is right next to his. I talked to my mother-in-law this weekend. She said that she's going to have them both cremated, the wake an hour before the mass. They have their plot at another cemetery near us, so they will do the burial later, since they are an hour from us. I told her to set it all up (they are 85 and 86), so they will be all set. She just had a biopsy last week. At her physical, the dr felt a lump (she hasn't had a mammogram in years). She felt all of it. The numbing medicine does not work on her (they've done novacaine 3 times on her at the dentist, and she still feels it). But she's doing ok. She gets the results Wed. Fingers crossed. She's the main driver now, my father-in-law is having issues with his back and legs. It sucks getting old!

    I'm doing ok. The neuropathy in my hands and feet seems to involve all my hand now, and half of my feet. I'm still typing even though my fingers are basically numb. It really hurts at the end of the day too. I'm having a lot of twitching lately too. My eyelids (that really makes me crazy). I'll put my feet up and my foot will move on its own. My fingers also twitch. I'm also having issues speaking. I'll be looking for a simple word, I'll stutter and slur (and haven't had a drink yet). Yesterday, we had the kids and grandkids over, and my husband made me a couple of white russians. Everyone thought it was the drinks, most of it was what I'm experiencing. I'm going to ask her for an MRI of my brain on Friday. I'm not having headaches or blurred vision but I need to know. I hate to even open my mouth at all!

    Tomorrow, I'm going for a ride (3 hours each way) to a place I worked at at 15, with a co-worker who was 16 at the time. She's driving and I'm paying for the gas. I told her she could even drive the mini if she wants. We worked there in 1977 for two months in the summer. We worked on hiking trails, painted. fed the fish at the fish hatchery, worked KP, fertilized trees, etc.We stayed in cabins on cots, at the fish hatchery. There were 16 girls and 16 boys and 5 college age leaders. It was called the Youth Conservation Corps. We had a ball there. It should be fun!

    I too am worried about Wilma! I'll send her an instant message. Hopefully, she's ok.

    Praying your scans come out great today!! Let me know! Hugs!

    Love

    Lynne



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  • intothewoods
    intothewoods Member Posts: 449
    edited June 2018

    Hi Lynne,

    I just lost a long post for no apparent reason. I hate when that happens! Good that you know about a will and also look into a trust. In my state I think probate still happens even with a will. We created a trust.

    My dad died six years ago and he thought he had what he wanted to happen when he died all worked out. Problem was he wanted to be scattered in his garde but we had to rent his house to pay for his care so that just didn't work out well. He has been in my linen closet next to my mother in law who will be vacating her spot in October when we take her to her plot in Kansas. My sibs and I have finally agreed to sctter him in the ocean near a campground we frequented with him as kids. I know I want to be cremated but can't decide wht I want done with remains.

    sorry to hear about the neuropathy. I'm staring to have those issues too. My fingers are numb when I wake up but mostly it goes away after I've been up for awhile. Yes, ask for an MRI. I did and will have one on Sunday. I asked for it when I was having some headaches and dizzyness. A member of my cancer support group discovered his brain cancer while on vacation in australia where he had a major siezure and since we were planning an overseas trip I didn't want any surprises that far from home. After my onc ordered it I started to feel a little silly- no more headaches and the dizzyness which was more light-headedness hasnt' been an issue either. I emailed him again asking if it would be an unnecessary procedure but he wants me to have it which I knew he would since I opened the can of worms haha. I also frequently can't find a word or use the wrong one. It's unsettling to say the least!

    I hope your trip to see your old coworkers was good. A three hour drive each way would be very tiring for me! We leave for our cruise on the 16th and ack on the 30th. We are very excited although concerend about our dog who has a recurring skin issue that has reared up again. Can't get into the dermatologist before our trip but will take him today to see his regualr vet. He's our baby.

    image

    Much love to you!

    Lisa

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  • Lynne
    Lynne Member Posts: 641
    edited June 2018

    Hi Lisa,

    Let me know how you make out with your MRI. I'm going this afternoon to see the dr.

    Our trip was great. We left at 9 and got back at 6:45! We missed an exit coming home, and ended up adding an hour to our ride. We stopped to see our NH icon The Old Man of the Mountain. He fell down (it was a natural rock formation) about 10 years ago. We went to the memorial site, and they have these posts, and spots for you to stand by your height, and when you look up, he's back on the mountain (I now call him the old man who fell off the mountain). We got lost a little in the town we worked in. GPS was sending us elsewhere. We found it with help from a guy at lunch. It looks the same, but the cabins are now painted and there are a few more. It's now a 4H camp. Nobody was there, and we were peaking in the windows and having lots of fun memories! We stopped for ice cream up there too. Great day. She headed to her parents' house, which is in the same city as me, and then had to drive the 2hrs home to RI. I'm sure she slept great that night!

    Cute doggie. I'm so glad you are going on that cruise. It will be wonderful to get away!

    My mother-in-law had a biopsy last week, after her dr found a lump at her physical. She found out she has breast cancer. It's 1 cm (mine was 1.5). She is scheduled for a lumpectomy and sentinal node biopsy (which I had) in 2 1/2 weeks. She is not sure what she is going to do. She is 85 and will be 86 in Dec. My father-in-law is 86 and is currently unable to drive. His legs and back are bothering him. She's been doing all the driving. She said she can't drive to VT in August fot one of the grandsons wedding. I said you have 4 kids and 13 grandkids that can drive you there. You will be going! Please say a prayer for her. She is a very active 85 year old and looks at least 10 years younger.

    Here are some pics from our drive we took.

    imageThis is the after pic of the Old Man. You can see it from the highway.

    imageThis is how the poles put him back up on the mountain. It's pretty neat.

    imageOne of these was the leaders cabin. There were 4 groups of 6 of us and a leader that worked together.

    imageGirls cabins on the top of the hill, boys on the bottom. 2 of each with 6 in each cabin. The dining hall and bathroom building is on the right (only a little bit showing). It was a fun summer. We were there July and August in 1977. We were both 15.

    Good luck on the MRI Fingers crossed!

    Hugs!

    Lynne

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  • intothewoods
    intothewoods Member Posts: 449
    edited July 2018

    I'm so glad your trip went well. What wonderful memories! The Old Man is awesome. It's amazing they could put him back up! Thanks for the pictures. I'm sorry to hear about your motheri-in-law. It's hard to know what to do when you are younger and even more so when you are a bit older. She is in my thoughts for sure. I had the sentinel node biopsy which came back negative but obviously some little cell got through somewhere.

    My MRI came back negative like I knew it would. I tried emailing my doc that I didn't think it was necessary anymore and that I was just being paranoid after hearing that a member of my support group had his oglioblastoma discovered when he was on vacation in Australia and as we were planning an overseas trip I didn't want any surprises. But I knew he would tell me to do it anyway. I opened the can of worms haha. I've never had an MRI before and it was a trip. It was sooooooooooo loud with all different knids of beeps, knocking and unpleasant sounds. I'm not claustrophobic but I can see why some peolple nede to be sedated. I felt very anxious at times and wanted OUT :-)

    Keep me posted about yours.

    Hugs,

    Lisa

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  • Lynne
    Lynne Member Posts: 641
    edited July 2018

    Hi Lisa,

    The old man is really not up, it's just the way they had these posts on the ground, that if you lined them up, it looked like he was back up there.

    I'm glad your's came back ok! Good thinking to do before your trip. My MRI came back as normal, thank God! I guess the brain is still there. First one for my brain, but I've had several for my spine. I always close my eyes as I go in, then open them when i'm in there. They give us a choice of music, I'd rather just hear the MRI sounds, the music is terrible! It must be more side effects from the chemo that's causing it. My tumor markers rose once again by 50 points (305 last week, we'll find out today's on Monday). So now I am having my every 3 month scans at 2 months, in two weeks, before I see the oncologist again. Maybe I too will be on a new treatment. I will have her send me to Dana Farber, in Boston for a second opinion. I haven't been there in a couple of years. It's good to see what else there is to offer. Only once did the two of them have a difference of opinion, and the one I chose didn't work, and my local oncologist's choice (Xeloda) worked for 2 1/2 years (so far the longest). it's a crap shoot!

    I had my chemo today. Next week, hell week. This past week has been "hot as hell" week. In the 90s and humid every day! Longest heat wave I can remember. Tomorrow, rain and thunderstorms all day and "down" to 85! The humidity should be gone too. Planning a motorcycle ride with our friends, one day this weekend. Both look good, in the 80s and drier. Sat would be better, my last day on steroids.We'll see what our friends say. She has MS and has her good days and bad. We've been friends for almost 40 years! In each other's weddings. She was one of my bridesmaids, I was her matron of honor (married and a month pregnant with my first). My husband is driving to Burlington VT (6 hrs) to pick up a 1 year old snowblower he saw online, either today (if he can borrow a truck from work) or this weekend. It's a big Ariens (it's suppose to last longer, it should for 1700!). I guess he wants a jump on the snow!! LOL

    Still worried about Wilma. I sent her an instant message, nothing back!

    Hope you have a nice weekend!

    Lynne



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  • Lynne
    Lynne Member Posts: 641
    edited July 2018

    Well, I too am moving on from Taxotere. I am waiting to get my second opinion from the breast oncologist at Dana Farber in Boston. My local office will be making an appointment for me, and she suggested Ixabepilone and Gemcitabine. We'll see what the Boston oncologist says, then I'll make my decision. My local dr put me in for Gemcitabine in two weeks, in case the other oncologist comes to the suggestion for the next treatment. So I will enjoy my at least 2 week break (actually 4 week, since the last time I had chemo was 2 weeks ago).

    Hope all is well with both of you and your treatment is working for you!

    Lynne


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  • intothewoods
    intothewoods Member Posts: 449
    edited July 2018

    Oh Lynne,

    I'm sorry to hear this. I ho[e you get lots of time out of the next treatment whatever it is, I'm doing well and enjoying the Rhine cruise! There is a very nice lady from NH we have met. Several of our fellow cruisers are from your state. We have 6 more days of amazing sights.and experiences. I definately want to do another river cruise! I haven't loaded pictures to yc omputer yet but I'll send two or three of may favs later.

    Enjoy your break and keep me posted

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  • Lynne
    Lynne Member Posts: 641
    edited July 2018

    Lisa-So glad you are enjoying your river cruise! It sounds great! Enjoy every day of it! I can't wait to see the pics!

    Lynne

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