• Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Greg's update about being blessed compared to others suffering worse than us is absolutely correct!
    I'm sorry I've been out of touch here for quite awhile. I've had some issues n responsibilities that I had to deal with. Glad to report most of those are resolved and good:)
    I do need to let y'all know ( those I've gotten close w over the years:) y'all know who y'all are!!) that I'm not in remission any more. I start a new regiment of rounds of chemo this week once ghe meds are squared away. It was discovered in my body bone scan. The protein in my blood had elevated n gone down back in forth which gave the Drs concerns n they ordered the scan. The MM returned in my right arm. I'm not surprised since I had been having unexplainable pain in my right hand, remember? I had test after test run n it couldn't be diagnosed?!?! Well anyway that's my theory lol. I'm going to be taking revlimed, velcade ( pill not IV) n of course dexamethazone 3 weeks on /one week off. But I'm back if anyone needs me:))) I've missed y'all!!!!!

    3 Comments
    • DonnaSue's Avatar
      DonnaSue

      It's good to see you post again, Lynne. I'll be praying for you. The last time I called the nurse for my numbers she hesitated, then said it was good. So, I got a printed report and my Kappa is in normal range, Lamda is in normal range, but the ratio is creeping higher. I don't know what that means. I'm moving to a new area in a few weeks and will have a new doctor, and I will quiz that doctor about my own results.

      over 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I was so happy to see your name on a post, Rolltidelynne! I am not happy to read this update that your cancer is back.

      I will be praying for you and your doctors and hoping you go back into remission soon.

      over 4 years ago
    • jessey's Avatar
      jessey

      Glad to know you are again reaching out. True confession is good for the soul. I was toLD I was also in remission as it turned out I was not in complete remission. Decided to take a medication free, lasted all of 4mo.amf showed, up fiercely n another area, went 14 radiation treatment, only to be put on Revlimid/dex combo, then rediscovered both femor bones both pelvic hip joints need extensive, help, the he!ontologist, say it out of her league and refers me to a oncology social worker, and mental support.
      Guys I am like 2 years into this, all I wanted was a small window to normal, finding out there are no days off from this, I feel like a victim of domestic violence some day, scared to leave home alone, cannot visit places with steps, starting to wear depends.
      Lynn, you are resilient, you will do what you need, I gain a lot from your post,. Judy from the south, good looking in, sorry it took so long / I was trying to act like a grown up

      over 4 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Hi everybody:) Sorry I've been away from here a little while, it's been a little cray cray. A few short updates- first I feel great:) Went to my drs Thursday. They ran several tests, pics, etc - I've lost 1 1/2 inches, having trouble w/back curvature n it hurts:( they are fitting me for a brace- a few discs are breaking down n worried about compression. Also increased my MEDS CUZ I've built a tolerance. Easy fix. Next, I have neutrapenia. Trying to stay on revlimed- just have to wait n see. Have any of YALL experienced either change w your bodies?!?! I'm not upset, not worried but of course my daughter is! Ugh ( she worries bout everything!) Should I tell my sons? One lives far away. I'm just not sure if worth bothering them?!?! Thoughts?? Thank YALL, I've missed YALL!! Happy ❤️ Day:)

    6 Comments
    • BoiseB's Avatar
      BoiseB

      Happy Valentines. So sad to here about your back. If any part of your spine hurts your whole body hurts. Will pray for you at church today

      about 5 years ago
    • Kebohs' Avatar
      Kebohs

      Feel better. It's not easy dealing with a painful back. Many blessings

      about 5 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Hi Rolltidelynne!

      You have been on my mind today and I realized I haven't seen any posts from you in a long time. So, I dropped by your page ... and came across this update. I'm glad it is overall a positive update ... though it does sound like you're having some problems!

      Still, I am glad that you sound happy and content!

      Please drop by and visit with us from time to time!!!

      about 5 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    This week I found out 2 of my friends had cancer again. It reminded me of the opportunity those of us w MM have been given to have a 2nd chance n be in remission. I KNOW my cancer, or a new one will be back at some time. I think I'm prepared. I don't dwell on it and I remind myself the next time will hopefully be easier since I have a better understanding of what to expect. Going into my battle with no information or idea of what to expect , I think was the scariest part for me!! But I had to keep my uneasiness close to my vest since I didn't want to scare my kids more than they already were:) For those of you like carol72 battling another bout w cancer now - my thoughts n prayers are with YALL:) I just want to thank each of you again for helping me find the courage to live w my cancer and also to ready myself to fight it again!! YALL are truly the BEST GROUP OF PEOPLE I've ever known!! THANK YOU:)) Have a great week everybody!! Lynne

    2 Comments
    • Maddy61's Avatar
      Maddy61

      The best day of my recovery was when I found this site and people like you Lynne. I was in remission but didn't know what to do with it. This site has given me a sounding board and a bunch of mentors. I am grateful for my remission and even more grateful for my recovery. Prayers for all of us.

      over 5 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      Ditto maddy!!! I found this site after my SCT n I am so grateful I have it now!! Wish I had known earlier it prob would have saved me a lot of anguish!!

      over 5 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Realizing that thanksgiving is LITERALLY right around the corner, I wanted to remind everyone a little bit of advice regarding their meds:)) Last year I went out of state to visit my son. Due to chemo brain or just ignorance, I assumed I could fill my prescriptions when I got there at another walmart. However the scripts I had were my pain meds... I had not realized they couldn't fill an out of state script for narcotics!! Lol I was in a real fix!!! I ended up going to the ER twice n eventually got what I needed to finish my trip then I filled the scripts when I got home:)
    So,....make sure ALL your scripts are filled PRIOR to leaving town!! I would hate any of YALL having the difficulties and experience any unnecessary pain due to not realizing your meds can't be filled elsewhere!! Happy holidays and safe travels everyone!!! ( I'm writing this now CUZ I might forget due to chemo brain right before the holidays!!! Ha ha ha ha)

    2 Comments
    • Maddy61's Avatar
      Maddy61

      This was a problem with me too with my diabetes. I made an emergency kit that I keep in my travel bag. 2 days supplies of meds. When I get to where I'm going and have not forgot my meds, I use the emergency supply first. May not be helpful for someone else but it's worked for me so far.

      over 5 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      Great idea:))

      over 5 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Thank you What Next for having Cowboy82001 as one of the what nexters for the month!

  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    I was just responding to BoiseB, she was very kind to send me a message. While I was responding I felt a need to share this w YALL:
    We have all gotten very familiar w each other, we know some personal stuff and we know we can depend on each other for support, info, etc.
    But sometimes pay attention to the new people, or even us regulars, we might detect in their comments a NEED to support them regularly or even privately to see if we can be there for them!
    I am a friendly person but I'm also guarded w Internet stuff!! Ha ha I WILL NOT do dating sites even if I was healthy - there are crazy people out there!!!! But while I was talking to someone on here several months ago, I just "felt" he needed me to be his friend and help him!! We spoke a lot and then realized it needed to be more private for him to really talk n share:( Reluctantly yet happily I shared my email n then eventually my cell number. ***i am NOT saying share personal phone numbers, etc. I'm just saying what "I" did!!****
    Turns out he is an amazing person!!!! He became very important in my life and I could be there for him!!! So just pay attention YOU might be able to turn someone's life around just by listening, sharing, etc!! It could be very important n that persons last shot at finding happiness again:))
    Sorry I ramble n can't simplify my stories!! It's a horrible trait that I have:(
    Thank YALL for everything YALL have done for me!!!
    Lynne

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      Helping others through their particular fight is one of the reasons this site was formed. It makes the steps along the way easier when you know that someone else out there understands. Thanks for helping someone!

      over 5 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      It worked both ways, for sure!! He helped me in ways I didn't even realize I could attempt to handle:)

      over 5 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    I had told YALL about how my neice's ,who died from Hodgkin's lymphoma, high school was going to honor her with a purple out football game w a rival local team. Well, here is an article w a video and pics of the pep rally prior to the game! The proceeds from purchasing thirst were donated to cancer research:) the local hospital set up tents to swab for potential donors, and a double rainbow appeared over Glenda's soft ball field where she was a STAR, and then a single rainbow appeared over the field at game time:)) please read or watch this story about my NEICE n how her community rallied:)) just copy paste this link and on the left side it shows place to view pics:) after that opens and you are looking the tv video begins:) it is a VERY nice description of the story of how this began!! Thank YALL love each of YALL!! Lynne

    http://m.wlox.com/wlox/db_345190/contentdetail.htm?contentguid=yzWZrBZ5

    1 Comment
    • Rolltidelynne's Avatar
      Rolltidelynne

      If you click on link it wants you to get app:( instead just copy paste the link and then you bypass that:) just FYI:))

      over 5 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Update on Cowboy82001... He's still in ICU but everything looks like it's going as planned:)) they have had him up walking - he did 3 laps yesterday:)) I'm so proud of him, his attitude is great n his spirits are high:) he's extremely tired but soon this will be a "blip in time" and he can start to fight his MM!! He's such a great, brave friend and I'm so grateful the drs are helping him have a second chance w his heart!! Thank you University of Colorado Anschutz Medical Campus and his cardiac drs n nurses!!!!
    Continued prayers n good thoughts are very appreciated:)) Thank you all again for your continued support n friendships;))

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Very good news, we are always happy to hear good things.

      over 5 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Just wanted to request prayers for one of our friends here on what next. Cowboy8201 is having a heart valve replacement surgery done as I write this:( once they repair his heart and get him back on his feet they will begin chemo for his MM. Please say a prayer as you read this that he gets through this risky procedure! He has become a very dear friend and I know many of you have helped me in the past and I know you will help me by thinking positive thoughts and saying prayers for his safty through surgery and a speedy recovery:)) thank y'all!! XOXO...rolltidelynne ( Lynne)

    4 Comments
    • DonnaSue's Avatar
      DonnaSue

      I just saw this and said a prayer, let us know an update if you can.

      over 5 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      The surgery seems to have been a success!!! Of course I'm in Mississippi n he's in Denver, but I know he's in the ICU and doing "ok" :)His brother called me after the surgery and text me the next day on Saturday bout being in ICU. He said he would be in there for a week. I hadn't been able to talk to him, of course, since right before the surgery...then about 6 pm last night, I got an instant message from him!!!! He was "loopy" ha ha from pain pills and he said he was sleepy:) But he got in touch w me as soon as he could:))!!!! Thank YALL for your prayers for him!! He's going to have a long recovery but he's excited to have this part behind him! Now he will get better, have cardiac rehab, and then when cardiac drs release him to do chemo he will be taking a new drug that starts w "f". Sorry it's not coming to me right now, but I will look back n get the name...he asked on here if anyone had had it n didn't get any responses. It's really new. Suppose to be very fast n put people into remission without having a SCT!?!?! Maybe CUZ his MM doesn't seem too advanced...I'm not sure?!?! I will let YALL know as I know.

      over 5 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      Donna Sue, thank you for acknowledging my post. That means the world to me!! You just don't know...:) ((hugs)) Lynne

      over 5 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    The young girl I've been keeping YALL updated went to see our Lord about 30 minutes ago:( I thank YALL so much for the prayers and I ask YALL continue them for the family n loved ones for the next few days!! It just hit me a minute ago that when someone, like ourselves, are dx w cancer. The cancer does not just effect us ( the patient)!! It effects the ENTIRE family, our circle of loved ones and our community who love us n our families!! This family's reality was cancer EVERY DAY since her dx!! Now she's gone. 17 yrs old and it's now over:( where n how do we help the family go back to life? There life was fighting CANCER now the fight is over. But it really hit me what now? This thing ( CANCER) was cancerous to everyone not just Glenda! How do we help them know it's ok to LIVE AGAIN without this young girl? CUZ they HAVE to live n enjoy their lives. Glenda would want that;)) I love each of you n I appreciate so much more all those who love us!!! Family is the only thing we really have!!!

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Sorry for your loss, it's a hard thing to watch.

      almost 6 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Well guys the time has come for my daughters 17 yr old niece:( they got the phone call today that her liver was too far gone and they are flying her home from st Jude's tomorrow. They are saying maybe 3 weeks...:( the family has not ever considered this as a possibility and of course everyone is in shock! The Brice has been told, I don't know anything further regarding her emotional state. The mother I think might be suicidal from things she has said in art 3-4 days!! I need advice for my daughter...she has my illness all wrapped up in this cancer CUZ of her own fears regarding me!?! I don't know how to really explain it but it's hitting her hard cuz of it being Glenda! BUT also hard cuz I HAVE cancer that is not curable!! I font know what's going through Glenda's mind or how to help or comfort her or the family!! I don't know the right advice for my daughter!!...I realized that in LAST 30 minutes!! My daughter has asked me how I deal w my illness. I've been honest w her, and luckily I've been pretty good with MEDS helping me with every day abilities. BUT I don't know how bad MM gets, I don't know what to expect, will I need caregivers, I read about "THE BEAST" of MM all the time! Yes I have horrid pain that is controlled! I have neuropathy, I get really strange stupid infections, I REALLY have to watch for pneumonia and shingles...but what else?!?! Bottom line. How do I help my daughter through the next few weeks watching her niece die? ( she is 5'7" n weighs 75 lbs:(!!) then how do I face my own mortality and what should I prepare for and help my children get ready for?!?! I've been relatively ok for over 2 years. I've been dx 3 yrs ago, so if lifespan is 5 yrs what happens?!? Is it sudden? Idk I guess I'm just overwhelmed too cuz I need to do n say the right things now and for the future. I don't want my children to be in denial like the nieces' family is:(( it doesn't help I have a nasty summer cold n running low grade fever so I can't help w the baby or hug my daughter yet:((!!

    15 Comments
    • lindi143's Avatar
      lindi143

      Glenda sounds like a wonderful person and she is at peace with her decision. I am praying for her and the family. it sounds like it is nearly time for her to be at peace at last. I am so sorry .

      almost 6 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      My daughter told me yesterday that she's trying to eat more! Bless her heart...her mom had a long talk w her brother n my daughter and asked them to watch her ( the mom) really closely once it happens. She realizes she might go to a dark place and she's asking for help now!! I'm so happy she understands she will need people to hold her up!!! She has another daughter who is 15... The sister (15) has a very CLOSE relationship w Glenda!! She's being very quiet and offers to run errands ALL the time:( while they were at st Jude's Alyssa had to move in w another family CUZ of school, etc... She wants to go back there n not watch what's happening:(( oh I so empathize w her!! I was 15 when my mom got sick. At 18 I left college to come home to "help" w my mom. My other siblings were all married n had jobs. It was so hard to watch my mom go away every day!!! I think she needs to be watched closely and not be forgotten:( I'm going to do my best to keep an eye on her... Please in your prayers mention the strength needed to help those who are the people this family will need to lean on too, so they have the strength to be strong for them!! Thanks YALL:) every day should be treasured and I'm going to do my best to enjoy :) have a safe and happy weekend!!

      almost 6 years ago
    • DJS's Avatar
      DJS

      I truly hope Glenda's younger sister is allowed to return to the home where she lived while the family was at St. Jude's. Glenda needs to be allowed to go through this without feeling she's putting an undue burden on her sister, and her sister needs to be allowed a semblance of a normal life and a break from the overwhelming feelings and attention hospice requires. It takes a lot of energy to try and be cheerful for those around us, and Glenda doesn't sound like she needs or is able to summon that up right now. Her sister clearly wants to do something -- anything -- to make a contribution to relieve the inevitable drama. Her contribution can be made in short visits (when/if Glenda is up to it), while she tries to collect herself and block out something no 15 year old should have to endure.

      almost 6 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    I want to say thank you to all my what nexter friends!!!!! I also want to say IM BACK!!!:)) I went through a rough couple of weeks trying to work through some things and I reached out n shared my vulnerable side instead of the upbeat side of me. I am n have been truly more upbeat and positive through my journey than even I would have guessed I would be!?!?! But my attitude/ emotions were clouding my journey to the point I needed YALL to give me a push, punch, kick, etc etc back to being me!! And YALL did just what I hoped you would do!!! My situations have not changed, but my attitude towards them have:)) I'm letting it go n allowing my path to be guided and trusting the good Lord will see me through it:)) I think DJS said it best, "...Ultimately we are all one tribe, and we all go on this journey together."
    Maybe that's why her dying hit me so hard:( I'm going through this journey w her and was projecting feelings I hadn't even thought about on my own situation on to this and it was snow balling on me!?!?! Regardless I'm back! And I will do my best to keep my positive outlook and be a friend to any of YALL who need me!! XOXO Lynne

  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    I USE to feel guilt when I wouldn't follow suggestions on eating/drinking health foods and beverages such as green tea! I knew I would not be strong enough or diligent enough to hang in to accept these tastes that I can not tolerate:(( ugh... I would feel like people didn't think I loved my family or my life enough if I wasn't willing to try these healthy choices out!!! But that's not the case I DO love my family and myself!!! I just DONT like those foods!!! I was selfish and now I'm glad I didn't waste my time:)) please read:)
    http://gawker.com/green-juice-will-not-cure-your-cancer-1705579750

    4 Comments
    • kerrijan's Avatar
      kerrijan

      I have to say that although I am heavier than I should be, I was almost thankful to have a little extra on me while I went through chemotherapy and stem cell transplant. My health is great as I choose the foods that keep me balanced and healthy. I don't have high cholesterol, high blood pressure or elevated tri glycerides associated with poor eating habits. I balance my foods with good vitamins/ vitamin B complex. Juicing is a healthy alternative but not always the most convenient with a busy lifestyle.

      almost 6 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      Thank YALL:) Greg, I'm like you. I eat what I want and when I want it:) I don't go overboard with fatty things. I'm like Kerrijan, I try to balance. BUT if I want something special by golly I'm going to get it!! Life is too short to not enjoy it:)) but kudos yo those who want to eat healthy. But it won't change their cancer:(

      almost 6 years ago
    • DJS's Avatar
      DJS

      My uncle had been a health food convert since the 60s, and he got cancer at the same time I did. I sat hooked up to chemo next to people extolling the benefits of green juices, xyz supplements, etc., and told them all: when I go, I'm going with pastrami stains on my clothes. I bought a lot of time by giving up smoking back in the 80s, if I have to give up some because I'm still enjoying food it's worth it. (Mind you, none of my illnesses have been food or obesity related! That's a whole 'nother discussion.)

      almost 6 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    I just started to ask a question and it took on a life of its own and sounded like a pity party! I'm trying SO hard to stay optimistic and thankful! I guess I'm requesting your thoughts n prayers ( if you are so inclined) to help me through a tough time I'm having! Physically I'm doing well:) it's my emotions and staying positive about life. If I were just fighting being sick - I CAN do that!! But right now it's hard to FIGHT to stay around when I can't find a way to support me and have a place to live my life! My situation seems to fall right in the crack of "no man's land"!! Damned if I do n damned if I dont!! It sucks and I'm losing hope!! No need to respond but would appreciate if you could send positive vibes this way:) I'm hoping I will feel them and they give me strength!!

    2 Comments
    • DJS's Avatar
      DJS

      Well, if you're having a pity party be sure to wear a great outfit! Seriously -- it's not as if cancer isn't depressing enough, everything and everyone in our lives reacts differently, and that really compounds the stress. I'm definitely sending good vibes, but I'm also hoping that you realize that while you have a right to sing the blues, your medications and life situation can really set your body chemistry in a whirl, and you might really be helped by anti-depressants right now. They'll help lift you out of the repetitive dark thoughts so you can break that cycle and start to sleep better, think more clearly, enjoy things when appropriate, and deal with the more complicated issues from a stronger viewpoint. Talk to your doctors and they'll help you get what you need. And once that's in place, make sure you're in touch with all the social agencies that can help you in your situation. Right now things look pretty bleak, so you might not be in the best frame of mind to think of alternative solutions or do some research into where to turn next. Take a deep breath, get some sleep, see a movie that can make you really laugh…and then start fresh. If you're doing well physically, don't waste your time at a pity party; you can have more fun at your next birthday party! Go put on some lipstick, get out and make some mischief!

      almost 6 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      I am on celexa. These last few weeks have just been a little off for me and big things are happening that I don't feel in control of. But having said that my fath is helping me and the comments I've received with help on issues has put me back on track!! BTW you are absolutely right about the outfit!! I will make sure I'm decked out next time I have a pity party!! Ha ha ha ha

      almost 6 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Good morning all:) I went to the ortho surgeon yesterday regarding my carpal tunnel. The surgeon was 3 hrs away. (My hematologist always refers me to specialists around her office.) He walked in, introduced himself, and said he "could" do my surgery but really thought I should seek another surgeon where I lived. He said he had a friend with MM and he knows infections are a big concern. I TOTALLY agree w having a surgeon closer to home ( cuz would be outpatient surgery), and I'm very pleased he recognized infections would be something that NEEDED a to be watched!! He also said my meds I'm on and meds im allergic to would tie his hands. That I understand as well. Here's where I need feedback... 1) I have a mild case of carpal tunnel - should surgery be the immediate answer? 2) he told me carpal tunnel is NOT painful!?!?! Well, my hand causes excruciating pain!! My daughter googled carpal tunnel and it says in several places it refers to the PAIN!?!?! 3) I felt like he decided before he saw me he didn't want to be my dr, that's fine but I wish he had been straight up w me instead of me driving 6 hrs to turn around... Have YALL been turned away cuz dr worried bout treating a MM patient?!?! Have you been made to feel like you're making up symptoms?!?! I know some people drug seek, but do people surgery seek, too?!?! That's how I felt he thought of me:( i DONT want surgery if there's something else we can try!!! Idk just little confused... Any suggestions? Maybe 2nd opinion would be good idea - down here, IF my Drs are ok w that...

    6 Comments
    • Rolltidelynne's Avatar
      Rolltidelynne

      Thank you Gina. Ken, and especially you, lynniepoo:)) I thought I might have been overthinking this, but... He really bothered me. As for it being a "mild" case , that's what he said! I can't imagine a bad case if the pain gets worse!?!?! But I DO want to try other stuff before surgery!! I get shots in my shoulders and I read somewhere that day driving home...that people have gotten shots in their wrists/hands (?!?!) that seem to help! I'm not looking forward to shots either but it's better than surgery I would imagine:) but yes I am going to get a 2nd opinion closer to home. I thought since my hematologist referred me up there I prob had to go up there... I'm going to talk to them next visit:)
      Thanks YALL, I knew I could get great advice and support from my What Nexter peeps:))

      almost 6 years ago
    • GregP_WN's Avatar
      GregP_WN

      Just curious if you have found a new Doc closer to home yet? That's the trouble with the doctors around us in our little town, they are not advanced enough to be help in the serious cases. To get a good doctor or oncologist specialist, we have to go 2.5 hours away. That's just one of the drawbacks to living in the country.

      almost 6 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      I'm ashamed to say I haven't looked yet:( I'm sure I can find one here in Gulfport/ Biloxi, but I've been dealing w some other pressing issues:(

      almost 6 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Hope everybody is having a great morning!! I saw my hematologist last Thursday, after being off my revlimed for 3 months while they determine what is going on w my right hand, and he was excited to say I AM in remission still. He didn't have to use the word "stable"!!! Lol they have set up an appt w a ortho surgeon on the 14th. I went to the hospital yesterday and had a "nerve test" done. The doctor there confirmed it is carpal tunnel. Now we just have to see what the ortho dr says!! I feel a lot better just having a confirmation of what it is!!! Lol the pain hasn't stopped but my mind can stop "guessing"!!! Has anyone had surgery for carpal tunnel? It's my right hand n I'm right handed:( I hope everyone has a great day, and HAPPY MOTHERS DAY early:))!!

    7 Comments
    • jessey's Avatar
      jessey

      Use a but cracker or crab cracker to open your soda, I'm a pepsi-holic. Having some of the same issues, but my pain is in the elbow up to the shoulder. My arm is plastered with magnets and salonpas. I know how it is to live alone and have to make modifications, everything I use is lined up on my comfort level, my heart won't let me bend over. You are a trooper hang in there, got you on my prayer altar. I'll be positive for you.

      almost 6 years ago
    • lynniepoo's Avatar
      lynniepoo

      I had emergency hernia surgery in November, didn't have time to worry about it so didn't stress. It went well and in spite of my MM and heart issue I did well. I of course live alone but was able to get around. The next week was Thanksgiving so I just let my family do it all and spoil me!!! I always worried about surgery with MM but it went fine. I think I remember it taking about a month on my hand to be able to really use it after carpal surgery. It was of course out patient and the next day my ex took off with his brother instead of staying and helping me. Changing my daughters diaper (she was about 2 at the time) was interesting doing it one handed..... Just prepare some meals ahead of time, make sure you have everything in order and you should be fine. I couldn't do buttons with my left hand I'd get so frustrated!! When are they thinking of doing surgery? My Dr was so funny he told me while he was doing the surgery "oh you should see your nerve, it's REALLY squished and so red"--I think NOT!! Had no desire to see the inside of my hand!!! :). Do you just have to do the one hand?

      almost 6 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      I'm not sure Lynne, I will know more when I meet the surgeon on the 14th:)) thanks for the advice ladies!!!

      almost 6 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    I need help from y'all to want to keep fighting... Today I found out my SSI was being cut in half:( y'all know my story...got dx, lost everything filed BK, husband left me in town didn't know anyone and no source of income except SSI-$733/month. Family jumped in to help monthly . Can't get disability cuz I'm missing 2 hrs of credit caz I can't work to get those 2 hrs:(( so when I moved I changed my address w SS. The woman was like oh no if he moved out 2 yrs ago how are you making it??? I said occasionally my kids HAVE to help me ( my mistake):( then she set up an interview w SS lady. Next thing I know it's cut in half!!!! All because I NEED my kids to help me- which is really hard!!!! I was already struggling n having hard time making things work :( I cut back to the bare bones!!!! Total contrast from my life pre-cancer!!!
    Y'all know me as a happy, positive person most of the time... But y'all I really feel like giving up!! I can't keep pretending I'm ok !!! I don't have enough fight left! I don't even want to go to my next dr appt now. If I stop treatment what happens? I really don't know how bad MM gets!?!?! But truthfully after the last few years dealing w all this, I'm tired!
    Thank y'all for always being around. I think I'm going to back away until I can be that positive person again. In the meantime know I'm cheering for y'all to stay healthy n happy;)

    4 Comments
    • Rolltidelynne's Avatar
      Rolltidelynne

      Thank you Donna sue!! It DOESNT make sense!! But it's a THEIR rules!! Again, we NEED an advocacy group just for cancer patients:( I am at my wits end! I really don't know what to do next! Yes, my kids are very upset! One was mad at me last night but then the other 2 said for her to stop blaming me, they are scared too! I am going to appeal but we all know what that means...nothing !! I hate to say this...but there are certain people who know how to "work the system"!!! I NEVER relied on anybody before much less government assistance!! I didn't know being honest that since my husband left my kids have struggled to help me would hurt me!! I am on so much pain meds, and maintenance chemo is making chemo brain stick around... I think I'm rational but sometimes my chemo brain makes me feel stupid. But I know I'm not to blame on this situation:(( I am so emotional right now I want to crawl in bed and never get out! I've tried so hard to stay positive and take what life gives me n make it work AND be appreciative and happy. But this time I don't know how to make this be ok since it was such a HUGE struggle before they cut my $!!! Seriously I have moments where I wonder if it wouldn't be better if I was gone n then the kids aren't burdened w me!! That was my BIGGEST FEAR when dx, I NEVER EVER wanted to be a burden to my kids!!!! Now, there is no way around it.... If I am around. I will never remarry, I will never work again, there's so much I will never do again to help alleviate my situation:( I'm sorry, I shouldn't dump this on y'all. That's why I need to get off the site for awhile. Again thanks Donna sue for being the only one who responded:))

      about 6 years ago
    • Cowboy82001's Avatar
      Cowboy82001

      I agree with DonnaSue. I had to fight the system as well. Counsel should be able to provide you with FREE assistance if your explain your system. Try Legal Aid in your state and if not listed contact your state attorney generals office. They will help. In the interim. Keep your chin up buttercup. You are not alone in this mess. Try to NOT focus on what you cannot do and focus on what you CAN. I am in a similar boat and I know it is hard. Take courage that we all are dealing with hard issues. Try and find a diversion to thinking of negative things while on chemo brain. It is the only thing that I could do besides praying for help. That too will help you. GOD does listen and will send angels to assist. You will see. :)

      about 6 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      Wow!! You have come along right at the right time to cheer me on!! Thank you. I just got through writing on one of your experiences... Lol small world:))

      about 6 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    I went to my dr yesterday for quarterly visit. We discussed my hand situation. ( I get excruciating pain in my right hand, we stopped Revlimid temporarily to see what's going on). They did my annual full body x ray and several of my hands and neck area extra. About 28 x rays!!! Lol. Today I have to go back and do Doppler pics?!?! They are still holding my maintenance chemo until we find out what's causing this pain. Theories are...blood clot, kink in my arteries in my neck!?!?!, some kind of syndrome that can make the blood flow differently?!?!... Idk it was all confusing. BUT I'm very happy they are taking this seriously and are going to find out what's hoping on!! My dr said if I'm complaining, he KNOWS it's bad!!! Lol so...I'm making the 7 hr track again today:)) they couldn't squeeze me in yesterday:(( but that's ok cuz it's relieving my mind that hopefully I will know something soon:) he did tell me to sleep w that wrist brace and try sleeping on opposite side to take pressure off my right arm n hand. I had already done that, so I knew after talking to him I was thinking smartly:)) my chemo brain is still a little bit of an issue so when he calls me back or calls me in I'm writing down everything!!! ( I should have yesterday and could be able to update better:(ugh...) y'all have great day n Happy Easter!!!!

    14 Comments
    • lynniepoo's Avatar
      lynniepoo

      Problem is new things keep popping up some having nothing to do with MM but complicated by the fact we have MM. Unfortunately as we age its a bigger problem. But yes if we know what it is and can investigate it makes it easier - I want to understand what is going on with my body and why. Wish sometimes I was the kind of patient who didn't want to know a thing and just do as I am told... :)

      about 6 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      I'm kind of 50/50 with the knowing lol!! But like my nose runny all the time drove me crazy not knowing why!!! Then I read the hairs in our nose fall out from chemo so naturally it makes us "runny"!!! Lol just knowing that relieved my mind of so much!!! If they come back even w not pleasant news bout my hand, at least I KNOW why. Then I can stop obsessing about it lol!! I'm weird I guess. As for the not knowing n just doing side of me... I'm guilty as charged:) I really have no clue bout mspikes, what happens next, how bad this will get before I'm not independent, etc! I just had/have so much to deal with in the last 2 years I decided to work priority down of info to process:( Now I'm stronger emotionally, I've learned to be alone, etc..now I guess it's time to educate myself more but I really kind of like dealing only when I HAVE to w bad news!! Lol

      about 6 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      When I was first dx, I asked my radiologist what stage am I? Cuz drs never told me... All I knew was my bone marrow was 99%! I knew it was prob advanced stage:(...but my radiologist said, "WHY? Why would you want to know? Cuz everything changes after treatment, SCT, ETC ETC!!" I guess I just kept that as my philosophy from that day on!! Ha ha So I base my "cancer stage/level/degree/etc on how I feel right now:) and right now I'm fairly healthy...just slower doing things ha ha. But I "can" do anything I want right now! It may be slower, or different than I did before ( adjusting to body changes) but I "get 'er done!!" Lol

      about 6 years ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Hi everybody just wanted to let y'all know Greg and his tech helped me out and I changed my name from llbhurst to rolltidelynne:)) I hope this doesn't throw anybody off but it does make me feel better to have my name changed:))) I am still Lynne ...a rose is still a rose... Lol

  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Thursday, I was on my way to my monthly doctor visit 3 hours away, and I got a call as I was pulling out the driveway... It was my doctors office. I have been rescheduled to see my doctor QUARTERLY:)) I also get my zometa quarterly instead of monthly!!! I'm taking this as a positive and a blessing!!! Hope I'm right!?!?! My scripts for pain management will be mailed to me monthly so this works out beautifully:) I just wanted to share w y'all my good(?!?) news!!!!

    2 Comments
    • Godschild's Avatar
      Godschild

      Yes indeed. Keep your eyes on your blood work results. Especially the Immunology tests; the Kappa Free Light Chains, the Lambda Free Light Chains and the Ratio.

      about 6 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      Thank you:) I will!!

      about 6 years ago