Rolltidelynne

Hi, My chemo was 2 years ago. I figured it was the zoladex since
its something new. IDK

Still trying to get an update on you. Miss our conversations on this site and just hope you are doing ok. You were the ONE who got me active on this site due to your wonderful upbeat personality, our common experiences and of course the name with an “e” on the end. Greg and I are both wondering about you.
Lynne Maroun

Hi Lynne!!
I am back!! Haven't been on what next for awhile but am doing better now. I had my aortic valve replacement via TAVR on Dec 3 and was home on Dec 7th. Doing fine so far. My team of Drs was fantastic and they so far have been pleased with my progress. My oncologist worked closely with them as well so I felt like everyone was on board!! So now after the holidays my project is to find Relief for the pain in my back. Have never been sent to a pain specialist so am going to try to get my Drs to make a referral for that. Have you used one? I am just afraid to keep using more and more morphine. My back issues still keep me pretty inactive which really bothers me. So just looking for advise I guess on pain specialists.
Hope you are doing fine.

Hi Lynne
I have been very lax when it comes to keeping up with this site. Just thought I would check on you and see how you are doing. I hope you are doing ok and that those comments you had to put up with have stopped. Are you still on Revlamid? So hard to deal with all the side issues with this disease. How did you know you had neutropenia? I fully understand your back issues--I have gone from 5'6" to 5'3" since my back issues started from compression fractures.
I have been doing cardiac rehab since Jan. But limited due to my back problems. Am going to start PT next week as my balance is so bad as my right leg is shorter than left due to my broken leg. I am so afraid of falling again and breaking something else as my bones are so weak. After my fall my Mspike was up and down but now has gone back down to .3 where it was before I fell. I feel ok but have good days and bad days. Going to see a pain specialist as I am so afraid of taking too much morphine.
Well I hope you are doing well and things have improved. Besides the "e" on the end of our name we always had so much in common. Take care!
Lynne Maroun

Hi Lynne
I haven’t talked with you in so long I am really mad at myself for ignoring this site. I’ve read a bit of what you’ve posted so am somewhat up on what you are doing. How are you and what is your status now? I miss our conversations . We both have daughters and I am so happy as mine has moved to Raleigh and is only 20 minutes away. I see her and her family every week.
Although I have great friends they don’t truly understand what we are going thru. It gets harder and harder as the months go on to keep active. So much easier to stay home and relax and lay on the couch to feel less pain in my back.
Enuf rambling. Please Let me know how you are and what is going on with you.
Best wishes
Lynne

Once again am trying to reconnect with you. Greg too!!
Hope all is well and this just means you are well and busy!!

We are just checking in on you to see how you're doing. How about an update? We hope all is well!

I was reading some of your comments and became intriqued. It seems me and you are in the same boat. I hope you don't mind me following you. I am still stuck on how I contracted MM. No one can seem to even give me idea where it came from. This is why I be reading comments. I was diagnosed in May 2008 after frequent bouts of pneumonia.I had a stem cell transplant in June 2010. I am currently taking Revlimid along with IVIG and Arieda treaments. I am currently in a remission state but still suffering from Neuropathy, Depression, Sleep Apnea and Asthma but all in all life is good. Just wish I knew how I got this and how long my remission last. My name is Sue and you can check me out on facebook as Suellyn Strong. Hope you don't mine me following you.

Lynne Your name has been on my prayer list for a long time but a week ago it jumped out at me. How are you doing?

We have been thinking of you and praying for you, Haven't seen you here for awhile. I hope it is because your are having too much fun.

Thank you so much for posting, I will keep you in my prayers

Hi rolltidelynne! Just wanted to stop by and tell you thnat i am thinking about you.

Lynne... Guide me on neuropathy. Did you had or have problems with this? Mine started on my feet ..now is my hands and fingers..driving me crazy! On meds... But I'm wondering if it will go away ever? My doc says that maybe maybe not! Thx girl!

I just want to thank you for your constant upbeat attitude. Your posts nearly always make me happy and smiling, despite the rough times you have personally faced lately.

Thanks for the follow, Lynne. Back at ya. Love, Chris

Lynne, how is Cowboy doing? My prayers are with you both.

I understand the love of college football. I am an Ohio State alum, and I love my Buckeyes. VA Tech gave us a scare on Monday, as they were winning at half, but my guys came through. We "should" have a cake walk this week, as we are playing Hawaii. Hardest part is the short span between games w/a Monday game followed by a Saturday game. I'll root for your Tide, except when they are playing Big 10. I was rooting for Wisconsin, but wow. And that poor guy who got his bell rung and tried to line up with Alabama -- that was kinda scary, and I really hope he's ok! Go Bucks! Roll Tide!

We are getting emails kicked back to us. Have you changed your address since signing up? Could you send your correct address to greg @ whatnext . com so we can correct it in our system?

Lynne So sad for your friend. I will pray for him and his family during this sad time.

Hi Lynne
I haven't been on this site for quite awhile. Have had a lot of things going on, some good, some bad. Sold my lake house and moved closer to my kids which was good but the moving process took its toll. Had to move so quickly that I ended up bringing way too much stuff with me just to have to unpack it all and either toss it or take it to Good Will. My college roommate and another friend helped me a lot as with my 5 compression fractures in my back I couldn't do much but little things. My college roommate (Judi) left on June 14 and I had decided to just rest. Asleep on the couch, phone rang, got up to answer it and my foot was asleep and my ankle twisted and down I went. Broke my right hip (probably due to lesion on the femur since I landed on a soft carpet), hairline frax in ankle, hit my ear on coffee table and tore it up and a slight concussion. When I do things I do them BIG!!! Had surgery on the hip (rod and pins etc) and was in hospital a few days, to rehab and right back to hospital as I was making no sense and ended up with mild pneumonia. Back to rehab and there for about 3-4 weeks. Released and stayed with my daughter for a week as I couldn't get any one to my house til the 23rd of July. Day I got to my own BED found out TV didn't work and fridge started this weird noise. TV fixed in a day but even with home warranty took 2 1/2 weeks to get fridge replaced. Judi came for 3 weeks and believe me, my guardian angel!! She had to buy ice every day put it in a cooler and transfer food to new ice. Two days after she got there I ended up back in the hospital with UTI and C.diff a horrible bacterial infection mainly due to taking slit of antibiotics. Thank you rehab I had a fever of unknown cause so they gave me two antibiotics for two weeks. Swell. Am on the mend now but hard to do much using a walker. Also have issues with my eyes from the concussion. Plus my ex is in final stages of pancreatic cancer ( a few days to a few weeks) so kids are trying to be with him as much as they can which I fully support. So have to rely on neighbors I barely know to help me out. I have fought becoming depressed and so far am ok but not easy.
Your friend who just had valve replacement I need to follow as I will need that at some point as well. What is his site name?
Well this was long but wanted to catch up with you and see how you are doing, we had so many similar experiences. Hope you are ok!!!
Lynne

Gm lynne..I have read on Chemo brain when I first started the trestment. I first realized I had it when my mom came down and stayed with us for a few weeks while I was in treatment. Her and I were talking and all of a sudden I went completely blank. Then we had a problem with our cable the tech was out he and I were talking and in mid sentence I lost all train of thought couldn't remember nothing. My mom was there then too and she finished my conversation. We found the article while I was waiting to have my radiation that day. My mom and I started laughing. I said hey that's ME.. we brought the article home oviously and I showed my youngest it and my husband and they weren't phased by it at all. My youngest had a really tough time when we found out I had cancer. To this day she doesn't talk about it she just rolls her eyes. Anyways I just thought that when I was done with treatment I would go back to what ever normal was prior to cancer. It's just been lately actually months and months now that I've been concerned about it and thought I was losing what mind I had left. Ty very much for responding and for the links to articles you've read. I don't discuss with this family anything going on with me related to my cancer because they make me feel like your done with that now move on kinda feeling. It's sad because with them in their lives what bothers them is sooo damn important it warrants listening child and husband that I just suffer in silence my pain or thoughts about my journey.

Happy belated birthday! I find I appreciate them more and more now that I have cancer!! Hope you enjoyed yours!

Lynne lets try Mfran, then the number 1 four times, followed by the number 3 four times, Then, at gmail, followed by a period then com.

Lynne,

My Email is Mfran11113333@gmail.com. It looks like yours was redacted on your response. Hopefully mine will not be either.

Lynn,
Just got back from Denver after a referral for a cardiologist in Denver, because the local surgeons said that if they do surgery, I would die on the table........ No SCT available for me at this point. Heart is only working at 10%. No heart surgery to try and fix, Heart is too weak. Major disappointment. They just sent me home to deal with this myself.

Positive VIBES TO YOU ANYWAY! You are far more positive than I. I think you will overcome.

I also am struggling. I don't know what to do next. My emotions are wacked. Faith in GOD is weak. Hope is dwindling. Help!

Hi thanks for the positive vibes in your post. Sorry for what you going through. May I ask why the decrease in you Ss? Carpal tunnel surgery usually not too bad. I hope will go ok for you. Wouldn't want to speculate on the technique your dr will use but have seen many go very well.

Lynn, here is another option if you need it. Cancer Legal Resource Center--www.disabilityrightslegalcenter.org/cancer-legal-resource-center. Also try www.raibenefit.org for financial grants.

Lynn, I had a thought last night regarding your reduction in SSI. Have you contacted your states congressional office? would contact both your US senator and your House of Representative. They may be able to file a "Congressional Appeal" of the matter for you. I had worked for the US Government for a while and those "appeals" get attention as they only have a certain amount of time in which to respond. I would push for them to assist you for a reconsideration of the SSA stated facts. If your children are giving you "gifts" in the form of money, that should not be documented as a "continuing" source of secondary funding.

Let me know what happens, Michael

Never give up, Never give in, Never surrender!!

Rolltidelynne,

Thank you so much for taking the time to try to help me make a little sense of the cancer (*God how I have come to hate that word) related carnage that seems to be engulfing me. Yesterday I just lost it and was so ANGRY I could hardly contain myself. Yeah, I know that that wont help but I am tired of feeling so helpless as this dreaded nightmare cuts like a scythe through friends and acquaintances alike.

Your response and the response of others truly makes me appreciate the friends I have made on this site! I consider all of the WhatNext family true friends that I will be grateful for until my day finally comes. We are a family of people who really understand the pain, feelings, fears, and even the joy of triumph of fellow survivors of this disgusting affliction.

Your words mean more to me than you will ever know and, once again, I thank you from the bottom of my heart for your obvious compassion. I do know that the message of this post hit me in a very special way and I am truly trying to improve the quality of and quantity of the friendship I feel for my family, friends, and even strangers. I appreciate your kindness.

My best to you & yours,
vet613