The Leukemia & Lymphoma Society - Fighting Blood Cancers
48 Replies Latest reply: Dec 11, 2009 5:29 PM by rmd123 RSS

Partially diagnosed

wtarlow Registered Users
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Hi,

 

I just found this site after a friend suggested that I start looking for support. I was just diagnosed with Follicular Lymphoma. I am waiting on the bone marrow results to come back early this week to get the full diagnosis but was told that I either have Stage 2 or 4 depending on the bone marrow. It is really hitting me the last two days that this is real and that I am about to embark on a life changing path here. I am scared and depressed. I know that this is treatable but can't stand the waiting for what will be the next steps. I have a lot of people chiming in with suggestions and recommendations. I have been seeing a great Dr. who has been watching me for the last two years when I had an atypical lymph node in my neck removed and this had just pretty much started. I have seen him regularly for the last two years and have kind of been waiting for this to be diagnosed. This last winter I had another lymph node pop up in my groin area and wound up with bi lateral shingles. The lymph node didn't go away and it was just biopsied a couple of weeks ago and was malignant. I actually wonder if I really had shingles although i just saw that someone else on the postings had mentioned that they had had shingles, so maybe that is common along with non hodgkins. I am curious how fast people have found support groups and what their experiences have been like. I have a 4 month old son with my partner and want to be here and lucid and functioning as I can be.

 

Thanks for listening,

Wendy

  • Re: Partially diagnosed
    CookieMonster Registered Users
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    Hi Wendy,

     

    Welcome to the Reluctant Members Club or the big old country kitchen table where you can get your favorite beverage along with fresh cookies, muffins or brownies, all virtual of course, but we like the visual of it.

     

    I, too, was diagnosed with follicular lymphoma but it had transformed to intermediate grade which means it was grade III, stage III when it was found in the roof of my mouth.  I didn't have any bone marrow involvement and no "B" symptoms either.  My oncologist explained to me that stage I and II is if the disease is above the diaphragm and stage III and IV is if there is involvement below the diaphragm or in the marrow.

     

    It is normal to feel depressed and scared, I remember it all too well and I was diagnosed in August of 2006.  This is great place to come for support and help and you might also want to post on the Living with . . . and look over to the side and click on Non Hodgkin's Lymphoma. 

     

    This is my only support group that is directly related to cancer.  I think there may be one that meets once a month here somewhere but I've not looked at joining it.

     

    Come here as often as you need to ask questions (we're not doctors but we will share our experiences with you), vent, read and even get a good laugh sometimes. 

     

    Hugs and blessings,

    Jane

  • Re: Partially diagnosed
    porciniak Registered Users
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    Greetings Wendy and hugs,

     

    This is a scary time for you, I know.  My 'baby' was 11 when I was diagnosed and my largest concern was her.  She's now 23.

     

    There are wonderful treatments out there and more in the pipeline.  You live on the East Coast, right? So you've access to the best, so be sure and get a second opinion from a specialist.

     

    Help me out here, group!  Which are the best in that area of the contry?  I'm on the West Coast and though I'd go anywhere, if I thought it made a difference; thnkfully the Hutch is in my back yard, so to speak.

     

    Here to answer questions and dispense hugs.  dj

     

    Support group?  Well, I was fortunate that I'd already seen a therapist on and off for a few years, and immediately made an appointment with her to help me 'sort' things out.

    • Re: Partially diagnosed
      wtarlow Registered Users
      Currently Being Moderated

      Thank you for the welcome! I saw the Dr today and my bone marrow is negative which i am so relieved about. I have stage 2 follicular lymphoma. We are starting out with Rituxan alone which was a surprise and I am relieved as well as nervous. I trust my Doctor a lot. He has been following what has been going on with me for two years now when I was just having a lot of atypical symptoms and biopsies that didn't provide a clear diagnosis. This last one was definitive. It sounded like we were going to start with Chemo and I am relieved that this is the first route that I will be trying. Curious what people have experienced who have used Rituxan alone?

       

      Wendy

      • Re: Partially diagnosed
        porciniak Registered Users
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        Trusting a doc is good-though I can't help but quote Regan, "trust AND verify".  Mos onc's welcome &/or understand second opinion request's.  That said, starting out with the least toxic treatment, when one can, is the best.

         

        Many of us have had Rituxan and I'm sure you'll get lots of feedback.  dj

        • Re: Partially diagnosed
          wtarlow Registered Users
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          Funny, in one of my earlier posts I wrote that I trusted my oncologist. Can't say that I feel that way now, a few months later. My head is still spinning. I did the Rituxan for 4 weeks and was finished at the end of August. NOw I am waiting for scans in early December but just last week the doctor confused me by telling me he had different thoughts about my treatment and that he was positive that I would be in remission once the scans were done. I know that I should be very happy about that but I am a very factual kind of person and really don't like someone stroking my back just to make me feel better. 5 days after I saw the Dr. I had a new node pop up right where the last one was removed for a biopsy. It could have been there when I was at the Drs. Not really sure but I have been on an ardent search for a 2nd and 3rd opinion. I am honestly so surprised by how depressed I have been since I saw the Doctor just  a week and a half ago. I keep telling myself that I should feel good but I feel horrible about what he had to say and confused. I think overall this is just an incredibly hard thing to wrap your mind around.

          • Re: Partially diagnosed
            CookieMonster Registered Users
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            Wendy, how are you doing?  Haven't seen a post from you in a while and hope it is because you're busy living life.  Whatever it is, I hope you can update us soon on what's up? 

             

            I, too, have a scan in December on the 17th.  Let's hope we both are still doing well.

             

            Hugs and blessings,

            Jane

            • Re: Partially diagnosed
              wtarlow Registered Users
              Currently Being Moderated

              Hi Jane,

               

              I am doing ok. Thank you for checking up on me! I wound up having my scan last week because I had a new Node pop up and after the Rituxan that shouldn't have been the case but Good News the scan looked really good. There was quite a bit of shrunken nodes. No answer about the new one but they are just going to watch it. I went for a 2nd opinion to another Dr at Cornell Weill and really liked her much more than my present Dr. I really was feeling so mentally screwed up from all of this and my Doctors response to side effects and his lack of answering my questions. I sat down with her and took a deep breath and told her very straight-forwardly the kind of Dr that I was looking for and asked her if she felt that she could fit that role which she responded well to. ANd then I proceeded to ask her a lot of hard questions about prognosis, statistics, life expectancy, etc... And I felt like she answered them all honestly and to the best of her ability without shielding me like i couldnt handle the answers. So, the answers were not nice ones but my head feels much better from having some clarity which I think gives me some strength to face this head on.

              I am going for a 3rd opinion on the 16th of December at Sloan Kettering which should be interesting.

              Good luck with your scan!

               

              Happy Thanksgiving!

               

              Wendy

              • Re: Partially diagnosed
                CookieMonster Registered Users
                Currently Being Moderated

                Hi Wendy,

                 

                I'm glad as you got your scan already and that it looked really good.  Also, glad you got to see another doctor and she answered your questions.  May I offer this idea regarding prognosis, statistics and life expectancy, doctors and numbers don't know the number of our days.  It's just numbers based on some people and each of us is different.  There may be some similarities in side effects, etc., but not one of us is the same. 

                 

                I hope that gives you hope and thank you for the best wishes for my scan. 

                 

                Happy Thanksgiving to you with hugs and blessings,

                Jane

              • Re: Partially diagnosed
                CookieMonster Registered Users
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                Hi Wendy,

                 

                I just wanted you to know that you're welcome to email me if you would like to.  My email is part of my profile.  How did your Thanksgiving turn out?

                 

                Blessings,

                Jane

      • Re: Partially diagnosed
        CookieMonster Registered Users
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        Hi Wendy,

         

        I'm glad you now know what it is you're facing and that you'll only get Rituxan.  It is definitely a doable protocol for most people with little or no side effects at all.  You won't lose your hair or many of the other side effects that come with much stronger chemo.  When does your treatment start?

         

        Also, you may want to post under the "Living with . . ." discussion board and then click on Non-Hodgkin's Lymphoma over on the right under Sub-committees and start a thread there to introduce yourself.  You'll likely get more responses to your questions because not everyone checks in on the Newly Diagnosed board.

         

        Hugs and blessings,

        Jane

      • Re: Partially diagnosed
        nursebaby Registered Users
        Currently Being Moderated

        Hello, Wendy, and welcome to the board...you have been through a lot since this all started for you two years ago, haven't you?  You have come to a great place of support and caring, though, by joining us here.  I was diagnosed with Stage 4 non-Hodgkin lymphoma, MALT type, in October of 2008.  I've been treated with only Rituxan so far for the cancer, though I did begin IgG (immunoglobulin) infusions three months ago to help with a severe lack of energy and stamina.  I'd like to direct you to another thread here in the "Newly Diagnosed" community, called "Recently diagnosed with Stage 3 Low Grade NHL".  It was started by "jakernus" (Jaime), and several of us answered her with info about receiving Rituxan treatments to give her an idea of what that is like.  Obviously everyone has different responses to their treatments, but the general administration procedures seem to be pretty similar, so you might find some of the answers you're looking for in that thread.  And I agree with Cookie Monster (Jane); do post in the "Living with NHL" community.  Sometimes it takes a little while to get responses, but you are more likely to be "found" on that part of the board, once people know you're with us.  I am so glad for you that your bone marrow was negative, and I hope that you'll keep coming for support and answers while you're on your journey.  Blessings, Nursebaby

  • Re: Partially diagnosed
    Honey Registered Users
    Currently Being Moderated

    Good Morning all,

    I am not sure where to start.  I was just partially diagnosed with B-cell follicular NHL.  I have just gone through my second biopsy (they removed the lump.)  It's been 19 days and I still don't have a definitive diagnosis.  I've been so worried, scared and shaken to core.  To add to the situation, I don't have insurance.  I was laid off a year ago and was in "good Health" to my knowledge and never elected to secure the "COBRA" insurance offered at that time.  Honestly, I thought I would be working or back to work in a matter of a couple months.  I found this lump in my leg (groin area) and didn't think anything about it.  While talking to my mother, I shared with her that I have this lump.  She is the one that told me that it's a lymph node.  That said, I completely freaked out.  A couple days passed and I finally got online to find the American Cancer Society.  I had to find out if there was a way that I could be seen somewhere.  After a days worth of calls I finally walked into a free clinic the following day.  Please understand that I've always had insurance and never thought in a MILLION YEARS that I would be facing something like this.  Fast forward to today,(BTW, this started in August 2009 but, I found this lump in January 2009.)  I still don't have insurance and have been rocked to my core regarding a definitive diagnosis.  To top this off, my unemployment is coming to end soon.  I so scared that I won't have any options for treatment once I receive the "official" diagnosis, and who would want to hire someone that is going to need "time off" for treatment.

     

    I've found myself in the valley of despair lately.  The night sweats are not just at night.  Although I will say that I drench the sheets at night.  I cannot sleep, I get maybe 3 hrs a night. Eating, well, I have the hardest time doing that.  I contacted the LLS and have been given a FIRST CONNECT partner.  I've spoke to her once.  I've never been one to ask for help.  I've also never been one to support anti depressants.  Right now, I think I would be a prime candidate.  I've lost me somewhere in this tumultuous tunnel.  I only leave my apartment to go to the clinic at this point.  I do have a DR. appt next week at the clinic, I'm hoping to talk to someone and get some answers. 

     

    I realize to some, that what I am going through is minor.  I just cannot seem to catch my breath.  Any comments, kind words or direction would be greatly appreciated. 

     

    • Re: Partially diagnosed
      kgirl Registered Users
      Currently Being Moderated

      Honey, words themselves are not a balm for the soul, but the following are heartfelt.  You have been blindsided, not once, not twice, but enough times to rock your world sideways.  To begin with, let's hope and pray that your full diagnosis, when given, will be the least of Lymphoma evils and easily managed and maintained.  Secondly, due to your efforts, you did find a free clinic, and perhaps, if you speak with the LLS Board and other members of the NHL community, you may find some help or at least be pointed in a positive direction.  Thirdly, I don't know where you are from, but I do know that in many areas of the country, Unemployment has been extended another 18 weeks or so, and here's hoping you can get an extension.  Insurance is a tricky business, and you may run into roadblocks in the future trying to obtain same, However, there are government agencies that can help you, but again not knowing where you are from, I wouldn't know which agency.  What you are going through is not minor, please don't sell yourself short.  You have every reason and right to feel depressed and sad, so don't deny yourself that outlet.  BUT, remember you are your very best advocate for this fight, and this is a temporary diversion in your life.  It's hard to be strong and positive when you feel so devastated, and not easy to do.  But I have faith that you have the courage and brain power to take good care of yourself, whatever that takes.  Phone calls, reaching out, asking for help as you are.  Try and eat well, and that doesn't mean a lot, but balanced with veggies and fruits and proteins of your choice.  If you can't sleep don't hesitate to ask for something to help, use when needed then discard.  Have an extra set of nightclothes and a towel by your bed (and a hairdryer if necessary). This tunnel you find yourself in may be long and winding, but there is light at the end, my promise to you.  May I ask how old you are and if you have a support system (family and good friends) close by?  You may feel alone, but if you continue to reach out I'm certain you will find others who have gone through some of the same things and may have ideas and avenues for you to explore.

       

      My heart, thoughts and prayers are with you, and I wish you the very best of luck.

       

      Kgirl

      • Re: Partially diagnosed
        Honey Registered Users
        Currently Being Moderated

        Hi  KGirl!

        Thank you so much for taking the time to read my post.  I'm still learning how to maneuver in this site.  I really appreciate your kind words. I'll start by answering some of the question you've asked.  I live in Southern California, Orange County to be exact.  I'm an implant here.  I moved here back in 1999.  That said the only people I know (knew) are people I've worked with. Typically, when your in Management your not allowed the luxury of getting to close to people you work with.  I have a grown daughter who is married with 3 beautiful children.  The rest of my family, parents and brothers all live out of state.  I wish I had a tight support group to lean on. I have a handful of good friends scattered all over the US. I do have my daughter, but, I've been trying to remember that she has a life of her own to live.  My first connect person said that I should lean on her more.  I'm in the process of learning how.(she has even asked that I do as well).   I've always been the person to help others wether it be listening or doing.  I've never been good at asking for help.  I'm 45 years old (I used to say young.) I am single.  I was in a relationship for 4 years.  That just recently ended about a month ago.

         

        I do have a preliminary diagnosis B-cell Follicular Non-Hodgkins Lymphoma.  There was something with the biopsy that they are calling "suspicious" it was sent to "City  of Hope" for more conclusive testing.  Those are the results the clinic is waiting to receive prior to giving me an "Actual Diagnosis".  I'm feeling things that I never thought I would feel.  Like my initial post, I've been rocked to my core.  I really am scared at what the future holds.  I wish I could get a grip on my emotions.  Part of me knows that once I get a diagnosis I then could focus on moving forward which would give me back some control in my life.  I explained it like this the other day.  Emotionally, I have the devil on one shoulder and an angel on the other.  All day long both fight for my attention.  I wish I could just turn my mind off for awhile. 

         

        I hope I'm making sense. 

         

        Honey

        • Re: Partially diagnosed
          Wobbles Registered Users
          Currently Being Moderated

           

          Honey,

           

          I’m so sorry that are in such a deep labyrinth that you’ve even lost yourself.  That’s needs to be remedied.  You need yourself more than anything. For one thing, I think you should try going outside for walks and trying to interact with people, even if it is just saying, “Good Day.  Nice weather, isn’t it?” Normal social interactions can help provide you perspective and help get your mind off the test results.   Try going out to a movie or doing whatever gives you relaxation.  I am saying: be nice to yourself.

           

          Good luck with your doctor appointment next week.  It is a good idea to write your questions down beforehand and don’t shy away from telling your doctor about your feelings of depression and lack of sleep.  There are medicines that you can use to help you in the short term.

           

          Joe

           



          • Re: Partially diagnosed
            Honey Registered Users
            Currently Being Moderated

            Hi Joe,

            Thank you for taking the time to read about what's happening in my life.  I am really trying to be good myself.  I truly am.  I'm making my way through this maze and find myself in corners crying my eyeballs out.  Apparently this is something that lots of people go through.  It's never been my residence.  I think that's one of the reasons why this "coming to terms" for lack of a better word, is so tough.

             

            It's one thing to be to be told that you have cancer but, for that to be the cherry on the top of a really bad sundae is just WRONG! I prefer chocolate and lots of whipped cream literally.

             

            I've been taking it moment by moment.  I look so forward to the responses on this websight.  It gives me something to look forward to.

            Today I'm gonna try taking a small walk outside, however, this would entail getting upstairs and taking a shower.  I do shower daily, my depression is not so bad that all I do is sit and cry.  I just have not left the house other than DR. appts.  I watch TV, eat, shower, brush teeth then cry.......:)

             

            I did sleep for 5 hrs last night. W was up at 3am. I'm hoping when I go to the DR. this Wednesday I can get some help with the depression and something to help me sleep.  The lugage under my eyes is packed for a really nice vacation in Maui.

             

            I've tried to have a little humor in this note.  Do you think it's working?

             

            Honey

        • Re: Partially diagnosed
          Wobbles Registered Users
          Currently Being Moderated

           

          Honey, yes!  I do see the humor in your post.  And I like it.  I’ve always enjoyed humor and try to use it all the time.  It is a kind of barometer of my emotional state.  Some days I am all high pressure with lots of good jokes and other days my pressure is low and I whirl in a fog.

           

          I can certainly see the difficulty of your situation.  However, I also see that you’ve got a good handle on what needs improving. I think you are going to do the right things for yourself and slowly, step by step, your life will get better.

           

          Now that you have a first connect person, why not try to find out if there are support groups in your area.  They may hold meetings where they can see each other face-to-face.  Cyber support networks are good, but they cannot replace the spontaneity, warmth and aliveness of direct contact.

           

          I hope your walk was enjoyable.

           

          Joe



          • Re: Partially diagnosed
            Honey Registered Users
            Currently Being Moderated

            Good Morning Joe,

            I try daily to get the humor to the surface.  Some days are better than others.  I contacted the LLS in my area.  Apparently there is no support group in my are at this time as the person that gives the sessions is currently out on leave.  I am very grateful for my Peer to Peer contact.  It will have to do for now. 

             

            I've never been an overtly religous person in my life however very spiritual.  My peer to peer contact told me of a church in my area.  Myself and my daughters family are planning on attending this Saturday.  On Sundays my eldest grandchild has his Basketball games.  Hopefully Sundays will work as the schedule changes.

             

            I'm trying one step at a time right now.  I've been a control freak all of my life and I'm learning that some things are just out of my control.  Cancer being one of them. 

             

            Honey

  • Re: Partially diagnosed
    kgirl Registered Users
    Currently Being Moderated

    Hey Honey.  So you live in Southern California (I live in Northern California) and a happy to say California is one of the states that received Unemployment Insurance extensions,  Hopefully, this will help you out, at least for a little while.  I was Management for 18 years, and have to say that getting close to employees can be hazardous yet I always did anyway.  Especially the younger ones who found themselves occasionally adrift.  But I was born and raised in California, and I can imagine how hard it must be to have to "transplant" oneself.  Listen darlin' if your daughter wants to help, let her.  Could be a benefit to you both.  Ah, darn, another blindside huh, with your relationship closing up shop?? You do have a lot on your plate, but as a good friend of mine says, let's work on making that platter a dinner plate, then a salad plate, etc.  Try to remember that Lymphoma, while not a walk in the park, has quite a few treatment options, ofttimes well tolerated.  There may be some unpleasant side effects, but let's cross that bridge if and when we need to.  EVERYBODY that gets a diagnosis of cancer gets rocked to the soul.

    Me, What, How could this happen???  I personally was told I had sciatica which wasn't sciatica at all but Lymphoma.  Everything that came after came so fast and furious, I'm still sorting through it (began last February, 2009), so I think I know how you're feeling.  When my mind spun out of control (which it did daily), I would get busy doing something, anything, I would stay away from anything promoting sadness (music, movies, etc.), and I would talk to my "virtual" friends.  I found it much easier than sitting across from a girlgriend trying to explain how I was feeling and coping, yet at the same time attempting to spare her feelings.  Cancer makes a lot of people uncomfortable.  Once you get a game plan going for your Lymphoma, you will feel a sense of control and acquire the knowledge that you are fighting the monster under the bed.  Moving forward is always an optimistic path to take.  Flip that devil right off your shoulder and give your angel a big ole smack!!!

     

    Feel better and please let me know when you expect to find out your next step.

     

    Kgirl

    • Re: Partially diagnosed
      Honey Registered Users
      Currently Being Moderated

      Good afternoon KGirl~

      Thanks for corresponding with me.  I said to another person that's responded to me that I do soooooo look forward to receiving responses here. 

      I'm in the infancy of making virtual friends.  I will say, I've smiled more today than I have in months.  It's amazing how I look forward to, some, any response in here.  It took a lot for me to open myself up and, share what I'm going through.  I don't expect this road to be a piece of cake.  I just never expected the intense level of emotions that I'm going through. 

       

      As for my broken relationship.  I had no choice.  Like I said, we had been together for 4 years.  Apparently in his 20's he was a drug addict.  He told me this but that was over 20 years ago.  Never gave it another thought.  When I told him about my cancer, apparently he hit a brick wall and started using again. He's so far gone that I don't know who he is anymore, nor does his family. I hurt for him, but, he has to want to help himself.  He's gone so far off the deep end that his choices began to hurt and scare me.  It was at that point that I had to ask him to move out. Drugs do bad things to people.  I mourn the man I fell in love with 4 years ago.  The man he is now, is nothing like the person I fell in love with.  Enough of this, I had hoped I'd moved passed him.  That ghost still pops it's ugly head out occasionally.  Like you said "I'll flick this off my shoulders".  I have to take care of me.

       

      I just looked up "sciatica" I had never heard of that before.  Oh my, there is a big difference between that and Lymphoma.  How are you now?  Are you far along in your treatments?

       

      I have a Dr. appt on Wednesday.  I have 3 pages of questions.  I know, silly huh.  I just feel like I need more information. I'm hoping they'll have the results back from the 2nd biopsy(they removed that lymph at that time).  All I know thus far is B-cell follicular Non-Hodgkin Lymphoma.  No staging or, grading yet, nor have I been referred to an oncologist.  The surgeon that removed the node took me on as charity.  When I went in for my follow up, he was VERY concerned as to why I had not been to see an oncologist thus far.  I'm thinking it's because I have no insurance and they want to be completely sure of this prior to referral. Your thoughts???  Then my head started to whirl.  Please don't get me wrong.  I am so humbled and thankful that the clinic I'm going to has picked up the tab and chose to see me.  My concern is "is this cancer progressing" while I'm waiting for the final diagnosis?  I don't want to be to pushy but the last biopsy was done on 10-26-09. 

       

      Please write again,

      Honey

      • Re: Partially diagnosed
        kgirl Registered Users
        Currently Being Moderated

         

        Well hell Honey, you and I fell off the same cart, different sides when it comes to a loved one with drug and/or alcohol abuse.  The abuser in my life is my daughters husband,

        whom I care for not at all.  Very long story short, he is an alcoholic with a drug problem and if I could jettison him from my life I would in a heartbeat.  I have a four year

        old granddaughter which complicates the situation.  Nuff said on that topic. Hmmmm, four years vs. two months, rather unbalanced scale, but it will balance out in time

        and like you so aptly put it, you need to take care of you first.  I've been through all the usual, diagnosis, bloodwork, bone marrow biopsy, PET and CT scans, Port placement

        and six sessions of R-chop chemotherapy Prednisone Therapy and Nulasta.  My last chemo session was June 30th of this year, and since then I have continued to improve and

        pray that this continues.  Cancer is a virtual roller coaster, and you willfind your emotions all over the place. All you can do is the best you can do and if/when yu feel a blue

        period coming on, do something, anything, to get your mind in another gear.  Joe had a great idea of getting outside, even if it's for a short period of time.  Get out in the

        sunshine, feel the warmth on your face, smile at a stranger even if you don't feel like it.  Try really hard not to be a hermit, because left alone to our own private hell is

        another type of hell all unto itself.  From what I understand, most Lymphomas progress slowly (I'm not a doctor, just my understanding).  Ask your doctor at the clinic you

        attend if he knows of anyone who can help given your circumstances.  Have you checked into Medicaid (not sure if that is the right agency or spelling, just know that there

        is medical help available for those who find themselves "inbetween" as you now unfortunately do.  I'm trying to read between the lines here, no judgement whatsoever,

        but are you saying the surgeon who did the biopsy is not your doctor and your doctor at the clinic doesn't know you are uninsured?  Bit confused here, sorry.

        You did have prior health insurance through your previous employer??  Don't mean to be nosy, but if you have been unemployed for a short period of time, would your

        previous employer consider trying to help you get COBRA??  It would have to be a continuation, so maybe I'm really reaching here.  At this point, maybe when you see

        your doctor on Wednesday you could have a frank and open converastion with him/her about your situation and see what transpires.  As for questions, you bet, ask

        as many as needed to arm yourself with as much information as possible.

         

        This text is once again refusing to wrap, so excuse the uneven breaks.  Humor is great!!!  Use it liberally. 

         

        Your friend,

         

        Kgirl

         

  • Re: Partially diagnosed
    kgirl Registered Users
    Currently Being Moderated

    Honey, where did you go???  How did your doctor's appointment go???

     

    Kgirl

    • Re: Partially diagnosed
      Honey Registered Users
      Currently Being Moderated

      Good Morning Kgirl~

      Cobra is out of the question at this time.  I've been out of work since last November. At the time when I was laid off, I was in great health (so I thought) Rarely ever sick and a very active woman. I really thought I would be back to work in a month or two. That didn't happen.

       

      The lines at job fairs are crazy here, as well as the people applying for posted job openings.  I've never seen it like this. I've was in the same business for over 15 years.  Had I bet the farm that this would be something tat I would be facing, I would have LOST everything.

       

      I did go to the Dr. yesterday.  I did get some information however, I was given 2 prescriptions for my depression and anxiety and have to take my daughter with me on Monday to the "All inclusive" information meeting.  The concern of the Dr was that I may not take everything in and, they want her there to make sure that everything is heard.  I see their point, as my mental state in the past month has been up and down on this emotional rollercoaster.

       

      As for my Ex, I mourn him daily as I feel he left me when I needed him the most.  Through this, I've realized that I can only depend on me.  Even though you don't stop loving someone over night. 

       

      While at the Dr yesterday, I was in a counseling session for almost 2 hours.  I let it all go in there.  I was more open about me and this cancer than I've been my whole life about anything.  I cried so much that my eyes are still a bit swollen today.  Funny thing is I had thought I could be Stoic. I started driving on the freeway, so did the tears.  I was given a journal years ago and found it yesterday.  I've decided to start writing in it daily.  I want to chronicle all that I'm going through right now.  In the DR, yesterday it was decided that we would work together and take it one step at a time.  Starting with the prescriptions. This is why the meeting was rescheduled and they are also trying to get me an appt with an Onocologist/Hematologist, that will work with me throughout the "treatment".  I feel good about that.  I was also told that I would not be handling all of this alone.  The clinic and staff want to help me. I am sooooooooooo very Grateful & humble right now.

       

      I don't feel as though you are judging me. I am grateful for your support and kind words.  It feels good to have dialogue with someone whos going through a similar situation.  I realize that there are people out there ready to judge anyone for anything.  I don't fear that.  I know that people will talk.  That is one thing that we as HUMAN BEINGS can bet on.

       

      Thank you for listening (reading) and your genuine kindness.  I do/will appreciate it.

       

      Much Aloha,

      Honey

       

      • Re: Partially diagnosed
        kgirl Registered Users
        Currently Being Moderated

        Honey, sounds like you made some giant steps forward yesterday.  Bravo!!  Isn't it an odd thing, when we do all the "right" things, yearly exams, mammogram, etc., only to be hit upside

        the head with cancer.  Jobs are crazy everywhere, but California is one of the hardest hit states, ergo the extended unemployment.  A journal is a good thing, I also have one

        as do many folks on these boards...sort of a catharsis.  Cancer is a life altering experience to put it mildly, and because we are such emotional yo-yos, it helps to go back and see

        how we were feeling the previous week or month.  It sounds to me like your doctor has something to share with you and wants you to have emotional support as well as someone

        to take notes (don't forget a notepad because it's easy to miss pertinent info when confronted with facts we may not want to hear).  Again, one foot in front of the other and one bridge

        at a time.  It is truly wonderful to hear you have a doctor and clinic willing and able to work with you in your current situation.  Until you know what your treatment options will be

        (if you need treatment) it's probably best to put your job seeking on hold for the moment, yes??  It would be difficult to begin a new job and deal with whatever comes down the

        pipeline concerning your diagnosis..  Please be sure to update Monday so we will know what's going on with you and your diagnosis.  We'll walk you through as much as we

        possibly can.  By the way, it was really good to hear you had a counseling session....can certainly help lift some of the burden.  Do something nice for yourself today!!

         

        Faith, trust and fairy dust.

         

        Kgirl

        • Re: Partially diagnosed
          Honey Registered Users
          Currently Being Moderated

          Hi Kgirl~&ShaShelt

          I have to say....I love this board.  It feels good to have somewhere to discuss everything that I'm going through.  It feels really good.  The idea of sitting in a kitchen at any time even, if just to have coffee & cry is more than I could have asked for.  I have a sweet tooth and make the best brownie cheesecakes. They're small like cupcakes.  I've brought a dozen and their over next to the stove, on the counter.  Please Help yourself! They're still warm.  YUMMMMMMMMMM...

           

          I'm hoping that the medication is working.  I know one is working because not too long after I take it I'm really relaxed and ready to get some sleep.  For the first time in months..I finally got a full nights rest(More than 3 or 4 hours at a given time).  I realize that it will take awhile for my body's sleep bank to get full but, it's a start.

           

          Got a call yesterday evening from the clinic that I go to.  Instead of me going into the clinic on Monday they found an Oncologist/Hemolologist willing to take me on as charity.  They rescheduled my APPTS for the following Monday at the clinic.  I hope he talks to me and is kind .  I have so many questions that need answers.

           

          More news.

           

          My peer to peer contact, May I say is absolutely WONDERFUL, put me in contact with someone from her church.  My family & I plan on attending on Saturday evening.  I'm hoping that this will be a good fit too.  I've wanted that for so long.  I want to be a part of a good church.  I say good, only, because I've had more than 1 church leave a really bad taste in my mouth over the years.  I've become more spiritual than church going because of those times. 

           

          Ladies, I seem to write better in the morning.

           

          I shared this board with my daughter on Wednesday.  When she gets home in the morning from taking my grandsons to school she's noticed that I am on this board.  She asked about it sooooo, I shared it with her.  I also let her know that there is a section in here for "Caregivers" as well.  I want her to be able to ask for help when necessary too.  She is married and has her husband to lean on but, here she can communicate with people that are dealing with a family member's cancer as well.  I need her to be strong and I realize that's alot to ask.  I just want her to be able to release the sometimes negative emotions that run parallel with this ugly monster.

           

          I'll write more later.

          Honey

  • Re: Partially diagnosed
    Registered Users
    Currently Being Moderated

    Ohmygosh!  How could I be so late?  I'm usually right on the spot responding to those cries of dispair from one waiting for diagnosis or receiving initial diagnosis or pretty much any other time!  Guess I was just too wrapped up in my own little world the last several days (or that traffic was realllllllllly terrible on the freeway!).  Soooooo....

     

    Hi all and Honey, welcome to the boards!!  I'm Sharon and usually known as the "coffee lady with the big ol country kitchen table" so kick off your shoes, pull up a chair, set a spell and have a cup of coffee and a chat!  The kitchen is open 24/7/365 and the coffee is always hot and fresh so make yourself to home.

     

    I'm so sorry you've been wonked over the head with all you've been through the last several months.  One thing to remember is to breathe......  breathe..... and breathe deeper..... let it alllllllllllllllllllllll the way out.....  repeat as often as necessary.  There's no calories, fat, sugar, or cholesterol in breathing so it's not only a relaxer, it's downright healthy!

     

    Fear of the unknown - damn I hate that feeling and I remember it well when I began this journey in 2001.  "Non-hodgkins lymphoma?  What the heck is that?  Cancer.  Cancer???  How could I have cancer??? No....you must be mistaken.  Look at that again.  Cancer?  OMG!!!  I'm gonna die...  definitely gonna die!!  What are we gonna do about this?  Who's a good cancer docotor? We have to start treatment right now.  Yes, NOW!  I have CANCER!  We have to do something right G-D now!!!"  and all manner of variations of that theme played out in my addled brain for awhile.  I got the results of the biopsy all by myself from the surgeon's office and on the drive home wondered how the hell I was gonna tell my hubby, son, family, co-workers, and friends.  Especially when I could barely THINK the word and not cry. 

     

    So I had me a really good ol' pity party with all the snottin' and cryin' and blubberin' a person could imagine (but I allowed myself only an hour or so) and when hubs got home, I told him (and cried some more).  And then I made a real boneheaded mistake - I jumped on the internet!  OMG!!  I didn't know enough to know what I didn't know.... and the first couple of websites were very outdated info (didn't notice that) and I read where the average life expectancy for b-cell NHL was a little over 9 months even with chemo - OMG!!!!!!!!   WTF? I asked myself....and then said oh hell no!  That ain't gonna be ME! Clicked off and never looked back!! 

     

    Found a good oncologist who seemed to take FOREVER <eye roll> to get treatment on the road (diagnosed in Nov '01 and began treatment in Mar '02).  But remission was mine in the summer of '02!  Lasted about 3 years....not bad for the 9 months that I originally found, eh?  lol  But since the summer of '05, I've relapsed now a total of 6 times and getting ready for a chemo again in late January.   Bottom line is - I'm still here, still kickin', still sharing my story, offering hope, and trying to talk down from the roof ledge folks who are just beginning this journey.

     

    Is the road always easy - nope!  Are there some scarey, sometimes physically painful times ahead - yep!  Will there be times you're going to wonder why you're putting yourself through all the tests and treatments - absolutely!  But will it be better on the "other side of the storm"?  Oh yesssssssssssssss!   Barb, and me, and a lot of others on here will walk with you every single step of the way if you need us to!  God ain't told me "it's over" yet, so I still have some walking in me.  Most days will be good, others, not so much but remember, the kitchen is always open and filled with other people who've been there; who really "get it" and when you make it through, then YOU will be here to lend a hand to the next one who will be joining the club and so on and so on.

     

    Never give up......never surrender!  You are about to join the ranks of the warriors.  Stay focused, stay determined.  Have faith and believe that whatever you need will be presented to you.  Find things in your life to be grateful for (yes......there are some!) and write them down if you must, add to the list.  You'll be surprised how hard it may be to make that first entry and in just a few days, they will come more and more quickly.  Attitude, honey.....a-t-t-i-t-u-d-e.  Screw that "stay positive" stuff!  It's all in the determination and attitude!

     

    I've rambled enough but you keep on posting - ask questions, let it out, you're among new friends here who do understand.  We're here to laugh, or cry, or rejoice, sympathize, and just let you be who you need to be at the moment.

     

    Hang in there!!  (another cup of coffee??)

    Sharon

    • Re: Partially diagnosed
      rmd123 Registered Users
      Currently Being Moderated

      Honey,

       

      I just stumbled across this site while looking for information about lymphoma.  I have not felt well the last few months, and, of course, after looking on line too much, I am afraid that I may have some sort of cancer. But I have not gone to the doctor yet. I am too afraid...I am very phobic of all things medical. But I didn't really come here to whine about my story, cause I know that I need to get in to see a doctor. I just wanted to let you know that your posts have really touched me. I joined today, so that I could post a reply to you! I was laid off a couple of years ago too, and didn't keep the COBRA, too expensive. I was like you, pretty healthy, so I didn't worry too much.

      I'm glad that , so far, you have had some help in regards to having the biopsy done.  I hope that there is more financial help for you.

      Have they told you what is next?

      I know how it feels to want to reach out to people to talk to. It really does help. This seems like a great board, amazing people.

      I  noticed that you live in So cal?? me too!! I live in San Bernardino County....Chino to be exact. My hubby grew up in Orange.

      So, I hope that you don't think I am some kind of strange-o....... like I said, your posts just stuck in my mind, and wanted to let you know that people do care, and you will be alright!!  I will continue to follow your story.

      Rita

      • Re: Partially diagnosed
        Honey Registered Users
        Currently Being Moderated

        Hi Rita,

        I too was scared.  I still am everyday.  I'm certainly not in any position to give advice at this time.  But I will say, seeing a doctor will help.  You'll at least know what your looking at.  You could even be worrying for no reason.  At the least you would have an arrow pointing you in one direction or the other. Should you find yourself needing support, you can certainly find it on this board. 

         

        Thank you!   It feels good to hear that my situation has touched you.

         

         

        Please feel free to follow my story and please...Chime in at any time.

         

        I really should rest for awhile. 

         

        Have a great weekend~

        Honey

  • Re: Partially diagnosed
    kgirl Registered Users
    Currently Being Moderated

    Hiya Honey.....your brownie cheesecakes are superlicious!!!!  I had two.  Sharon has the best Country Kitchen going and I've been in a few.  I'm so glad your meds are working and you're getting some much needed rest for body and soul.  Yippee....you've found an oncologist to help you through this journey.  I'm thinking he is going to be very kind and will answer all questions asked.  You are full of good news today!!  Your peer to peer contact is working well, you sound a bit more upbeat and you know you will soon have answers.  I think it's terrific you're sharing the boards with  your daughter....two are better than one, yes?????

     

    Stay focused and determined, and have a GREAT weekend.

     

    Your friend

     

    Kgirl

    • Re: Partially diagnosed
      Honey Registered Users
      Currently Being Moderated

      Good Morning!

       

      Did I fail to mention that the brownies are Peanut butter Cheesecake brownies.  Sorry....It slipped my mind.  Please forgive me, for all that could be allergic to peanuts.....

       

      Well,

      I went to the DR's yesterday.  It is most definitely B-cell follicular non-Hodgkin lymphoma. I go in the morning for a PET scan.  I then go next week for the bilateral Bone marrow biopsy.  Might I say that I am NOT looking forward to it.  He took the time to answer a couple of my questions but not all.  He said he wants the results prior to answering all of my questions.  He did say that because of my age (45) that he wanted to attack this cancer in the most aggressive way possible. He seemed very "as a matter of factly", about it.  Maybe it because he works with this daily???? In any event, at least we're moving forward. My daughter was in the waiting room and when we left she told me she was talking to a woman in there who's husband has Lymphoma.  He had his bone marrow biopsy right there in his office.  I was shocked.  Is that normal? If so, how come mine is scheduled at the Hospital? Maybe because of my lack of insurance? Thoughts???????

       

      Over the weekend, Sunday evening, I got 2 hours sleep.  Maybe it takes awhile for the depression med's to kick in? Maybe it's a side affect? Whatever the case, by the evening I was physically & emotionally exhausted. Looks like I will be spending alot of my time in the Doctors office, hospital and of course the counseling office.  Let me say this though, "I AM VERY THANKFUL FOR ALL".  I still worry about treatment though.  What kind, the effects, and all that goes with it.  I already feel like MS. Frumpy. Don't get me wrong.  I do take of myself.  I just don't feel like I used to.  I used to look forward to the weekends when I could wear sweats, flip flops and NO Make-up.  Fast forward to today and that's my normal attire.  I don't put on make up because I typically try to nap daily.  I'm not always successful at it.  I just don't like make up on my face while sleeping.  Have any of you gone through this?  Did you feel frumpy? Possibly "Broken"?  I do.  I don't feel like I used to.  I'm not trying to start a "Pity Party".  I'm just wondering if this is normal? Do I sound selfish? Self absorbed?  I hope not. 

       

      It's supposed to be a beautiful day here.  I took my 2 grandsons to school this morning.  Just a small car ride, but, It was outside and not the doctors. I'm also going to clean the patio today.  It will be a good day.

       

      Happy Thanksgiving to all~

      Honey

       

      • Re: Partially diagnosed
        rmd123 Registered Users
        Currently Being Moderated

        Hi Honey,

         

        I'm so glad that things are moving forward for you, it sounds like you are getting good care.

         

        How did your weekend go? Did you make it to church?

         

        My dad had a bone marrow biopsy a couple of years ago. (they thought he might have had multiple myeloma, but thankfully, it was negative)

        They did it in the office as well. But to tell you the truth, I would have rather he been in the hospital. Although he came thur it great, he was 86 at the time, and actually came out of the office doing a little irish jig. He's a crazy old man. LOL!!

         

        Again, I am very happy that you have found the doctors that you have, and that they are willing to help you out. What will happen when you start treatment, do you know yet? As far as costs go, I mean. I really hope they help you out there too.

         

        It is going to be a beautiful day today here in So Cal. We are blessed that way for sure!!

         

        Happy T-Day to you and your family!!

        Rita

      • Re: Partially diagnosed
        Wobbles Registered Users
        Currently Being Moderated

         

        Hi Honey,

         

        I am sorry to hear about the confirmation of lymphoma.  It sounds like your doctor is a go-get-‘em type of fellow.  Do you know why you are having a bilateral bone marrow biopsy (BBMB) instead of a unilateral BMB?  All my biopsies have been unilateral BMB’s with the doctors alternating sides of my hipbone.  I realize there are always sampling issues by in choosing a single site for a BMB, but is there more to it in your case? 

         

        I’ve had all my biopsies in the hospital, as that is standard protocol where I live (British Columbia).  You might be right about your lack of insurance being an issue or it could be the fact that you are having a bilateral procedure.

         

        I think we are all altered to some extent by our experiences with cancer.  In my case, I never knew anything was wrong with me until I had a routine blood test that showed that I was both anemic and neutropenic.  It took another year before I began to sense that something was wrong with me.   Most of my problems revolve around feelings of fatigue and weariness.  I can honestly say that I no longer walk with a bounce.  However, I have learned to find my joys in the small things of life.

         

        It is good to see your humor is still intact.

         

        You can send some of your good weather up to those of us living in BC.  We’ve been inundated with rain for the last month and could use a period of sunny skies.  We'll send you moisture for your dry forests.

         

        Happy Thanksgiving to you,

         

        Joe



  • Re: Partially diagnosed
    kgirl Registered Users
    Currently Being Moderated

    Good morning Honey...it's a beautiful day here in Northern California also, perfect autumn weather.  Listen darlin' I've had my share of pity parties, as a matter of fact you're in

    wonderful company when it comes to those particular parties.  We, sometimes, ask "would you like some cheese with your whine??"  It's perfectly normal to feel blue, sad,

    frumpy, etc.  You've had a major shock to your system and still know you're facing more "unknowns".  Try not to fret about wearing sweats and flip flops, no makeup, etc.  This

    too shall pass and might get a bit worse before it does.  If you feel self absorbed it's probably because you are.  It's my opinion that anyone who gets a diagnosis of cancer

    withdraws into themselves for a period of time, a self protection mechanism, not  unlike shock.  I think I was in shock for awhile because of the diagnosis and the speed in which

    I had to prepare for chemotherapy, and this involves a bit of preparation.  PET Scan, BMB, multiple blood panels, Port Installation, medication preparation, etc.  My bone marrow

    biopsy was done in the doctor's office, and in reading through the boards, I see that some are done in the office and some in the hospital.  I'm assuming bilateral means both sides

    and mine was just one sided, so maybe that figures in to where the BMB is done.  Don't know for sure.  I'm fairly confident that your doctor wants the results of the BMB and will then

    be more able to answer all of your questions, just a guess.  I don't think your lack of insurance plays any part in where this procedure takes place.  As far as treating you

    aggressively, I'm all for it.  I also was treated aggressively, went from diagnosis to four days in hospital to the following Monday the PET, Port placement, etc with Chemo following

    on Tuesday.  You can see why I think I was a little shocky.  BUT we get through it and move forward.  Honey, once you get your treatment lined up and share with your friends

    here on the board, we can, most likely, walk you through what to expect as each and every one of us has been in your shoes.  I just don't want to put the cart in front of the

    horse or offer information you may not want or need.  Like Sharon says, keep your arms and legs inside the ride, lock your seat and put your tray in the upright position.

    You're about to fly, and crash landing is not permitted!!!!  Peanut Butter Cheesecake brownies????  I knew they were yummy, thought I got a hint of one of my very favorite

    foods!!!!  Dang, someday's I wish we could turn a knob and hand goodies through the computer!!  Cookie (Jane) is our resident baker and she always has someting wonderful

    cookin' in her kitchen.

     

    Please let us know how you did with your PET and when your next appointment with the doc is.  We're rootin", thinkin" and praying for you.  Have a good patio cleaning

    kind of a day!!!!  By the By, if your meds are not working, discuss with your doctor.  There are different types, etc., and while one may work for me, it may not work for

    you. 

     

    Kgirl

  • Re: Partially diagnosed
    Registered Users
    Currently Being Moderated

    YOWSA!  Those P-B cheesecake brownies deserve Starbuck's coffee!!  lol

     

    So it's official with the follicular b-cell lymphoma?  Well...hello, my "twin"!  :-)  That's what this latest version of mine is officially been designated.  I've had diffused large b-cell, follicular NHL, and doc this last time referred to it as (seems like) a combo of the two?  Probably been that way all along....  but who knows and it prolly wouldn't have made a difference anyway.  I was 44 (almost 45) when first diagnosed too, some 8 yrs ago this month.  Time sure does fly when yer havin' fun, huh?  LOL

     

    So hang in there and hang on - might get to be a bit of turbulance here and there but it'll be alright.  We know who the "pilot" is.

     

    And as for..... your question about being self-centered and all.....  yeah, ya are but that's OK too.  It's expected at this stage of the game and is as it should be.  Time to focus on YOU for awhile and it's YOUR world right now.  If you're used to taking care of everyone else, STOP!  Stop for a little while.  Time for you to slow down some and let them to take care of YOU when you need it.  Just don't go down in the dumps for too long - it's a stinky ukky place full of rats and such.  That's what we're here for, to get you off the road to the dump and back on the road to the top of the mountains!

     

     

    Sharon

    "....I ain't battlin' cancer....cancer's battlin' me!"   (good gawd - will I ever get that tune out of my head - thanks, Carol!! lol)

  • Re: Partially diagnosed
    kgirl Registered Users
    Currently Being Moderated

    Hiya Honey....how did your PET go???  Is your BMB this upcoming week???  Hope you had a great Thanksgiving and let us know how you're doing.

     

    Kgirl 

    • Re: Partially diagnosed
      Honey Registered Users
      Currently Being Moderated

      Good Morning Everyone,

      I hope everyone had a beautiful Thanksgiving.  I must say Thanksgiving this year had a much greater meaning than any prior for me.  I have plenty to be thankful for.  I'm taking baby steps daily to get my heart and head on the same plain.  Much harder than I had ever thought.  I'm doing it though, Baby steps.

       

      I did have my PET last Wednesday. It wasn't bad at all.  The hardest part was lying still on the board that goes through the machine was the toughest.  Yes, This Wednesday, I have the bilateral bone marrow biopsy.  My hands sweat just thinking about it now.  Just the thought of that large needle going into my body spooks me to the core.  I have to endure this twice in the same day not just once....YIKES. I made the mistake of looking up a bone marrow biopsy on youtube.  That was just NOT SMART.  My anxiety has grown since seeing that.  My Peer to peer contact advised that I should just STOP looking things up.  I want to be knowledgeable about what I am facing, that's why I look.  I think she may be right. 

       

      I've found myself opening up to a few select "friends" about this cancer.  Very interesting. 2 of my closest friends(mind you, they are in other states.) I've not heard one word from either of them.  The promise of calls not made were very disappointing.  Maybe this is to be expected.  I had lived through a similar response when I was a teenager and became pregnant at 16.  I had to learn how to stand alone and lost so called friends with my choice to have my child.  I grew stronger because of it. Is it wrong to thing things should be different as an adult? Life amazes me still. Through my lessons as a teenager I've learned how to be a good friend and to not judge.  Does this make me a walking contradiction? Because I'm so hurt that they didn't call when they said they would. Maybe it's me?  I live by"all I have is my word."  I don't make promises because I've found in life, promises are made to be broken. Ok, I'm getting too deep here.

       

      I went to church on Saturday evening.  Found myself crying through most of the service.  I think I've found a church I really want to be a part of.  It's been years since I've walked into one.  My peer to peer contact from LLS recommended this church.  I even had the opportunity to meet her at church on Saturday.  She is such a wonderful person.  She met my family and I met her husband as well.  What a beautiful spirit.  I did do something right when I reached out to LLS for that.  Have I said how thankful I am to have this community?  If not May I tell everyone, I am so VERY VERY THANKFUL FOR ALL I RECEIVE FROM THE DIALOGUE ON THIS BOARD.  IT REALLY DOES HELP ME. I only hope that my life experience here will give someone else hope.  I too hope, that I will be able to be called upon to give someone the support, in the future that they will need to get through one of the most tumultuous times they will ever have to go through.  I know I'm not ready to do that yet, but, It is my hope.

       

      In any event, I have a counseling appointment today and an appointment at the clinic.  I'll keep everyone posted. Heck, I'm even ready to decorate my home for Christmas.

       

      Much HOPE,

      Honey

       

      • Re: Partially diagnosed
        CookieMonster Registered Users
        Currently Being Moderated

        Hi Honey,

         

        Yes, I too, have much to be thankful for and one of them is this discussion board. 

         

        Friends can be funny during times of crisis, some rise to the occasion like cream rising to the top of the milk and others sink to the bottom like a rock thrown in water.  I think some people just don't know how to respond and don't have the gift of compassion and thus they do nothing.  I think when they do that though they end up suffering too because it produces guilt on some level in most people.  They want to reach out, but are frozen because the don't know what to say or do. 

         

        Let us be the friends you need.  We understand the emotions and the ups and downs of this journey because we have empathy, we've been there, or are still there walking this journey out.

         

        I'm so glad you have an LLS peer to peer contact and it sounds like he/she gave you great advice in stopping the research.  By the way, do you get conscious sedation with your BMB, I did?  They not only gave me a numbing shot in the area, but I got some pain killers and anti-anxiety meds too by IV, actually I demanded them while I was hysterical and totally freaked out. 

         

        I'm glad you're also nuturing your spiritual side.   I find that very helpful on this journey.  Also, I think you'll find yourself helping others on this board in no time at all because you already have some experience with the journey that other newcomers might be experiencing.

         

        May your appointments today have gone well.

         

        Blessings,

        Jane

         

         

  • Re: Partially diagnosed
    kgirl Registered Users
    Currently Being Moderated

     

     

    Good morning Honey.  Your "baby steps" are taking you on the path you need to travel, and we all must walk before we run, yes?  Your heart as well as attitude in facing this crisis are commendable....good for you!!  Friends are a funny bunch.  I've found a few of mine were so uncomfortable with my situation they simply could not offer any of what I needed...no fault of their own, just how some people are built.  Easier to ignore or put off things that cannot easily be handled.  I also found, as I'm sure you have or will, that I also have, friends who can communicate on the cancer topic and the longer we go on the easier it seems to be for them.  Honestly speaking from the heart, the most benefit and comfort I have gotten is from these boards.  We all speak directly with warm, caring people who have traveled or are traveling this same path.  I agree with your peer to peer...stay of the internet.  I did it myself and scared myself worse than even the original diagnosis, no lie.  I am delighted you found a church you fell in love with as well as meeting your peer to peer and family.  You are so on the right track.  Much luck in the BMB on Wednesday, and although risky, I bet it won't be as bad as you have conjured up from your searches.  At least I pray not.  Kudos for getting on with your life, looking ahead to Christmas.  Decorating can be such a blast, especially at Christmas.  We'll all worry till we hear from you after Wednesday, so as soon as you're able, let us know how you did.

     

    Love, Faith and Trust sprinkled liberally with Fairy Dust!!!!  Hold on and hang in there, you're doing great.

     

    Kgirl   Once again the text would not wrap....sorry!!!!

    • Re: Partially diagnosed
      Honey Registered Users
      Currently Being Moderated

      Good Morning Everyone,

      On my second cup of coffee.  It's early, but, I thought I would get online this morning for my update(s).

       

      Well, Yesterday I did go in for my BMB's.  YIKES.....I am so thankful to have this board to share on.  Let me tell you that if it wasn't for me asking, I would not have received any sedation at all.  I let the nurses know how terrified I was about the whole procedure.  My hands were dripping wet because I was so nervous.  When my DR. finally got there. He said "How about we do the one side first and if that is too painful we'll sedate you and then do the other side".  Ummmm no thank you, How about we sedate me prior to any of it.  I had no twilight.  I was given some Demerol and there he went on the first side(my left side).  I held the nurses hand so hard her fingers turned blue.  IT HURT.  But, when he went on to the right side OMG, that was EXTREMELY PAINFUL.  He jerked my body as if the needle got stuck.  The tears came during that poke.  OUCH, Ouch, Ouch.  I gave birth to my daughter with "Natural child birth" No nothing!!!!! She came out so fast that they had no time to give me anything.  I tolerated that much better than I tolerated these BMB'S.  I had always thought that I had a high threshold for pain.  Ummmmm Nope not anymore.  I really believe that having cancer is hard enough.  I don't believe anyone should have to endure any more pain than necessary.  Thats my motto moving forward with this.  NO MORE PAIN THAN ABSOLUTELY NECESSARY. The Demerol kicked in after the procedure was done.  I was ok then.  When we got home, I took my dog out for a walk, ate some lunch, and napped for the balance of the afternoon.  When I woke up, YIKERS, the areas on both sides hurt.  I'm still in pain sitting on my couch with 2 pillows behind me.  NOT FUN at all.  I will be taking some motrin this morning after I have a bite for breakfast.  I did call the Doctors office on Monday, to ask how come my BMB's were being done at the cancer center verses his office.  I was told that he normally does them in the center when he uses sedation.  HMMMMMMM.

      I'm feeling more empowered daily(well, after yesterday).  I decided yesterday that I will now (As much as I can) drive this bus.  I know in my heart of hearts, that if I would have never brought up the subject of getting something for pain, my doctor would have just went forward without asking me how I felt about the situation. I am a very reasonable woman.  I know there are 3 sides to every story. We as cancer patients go through enough.  It should be as painless as it possibly can.  I do realize that this road is much longer, and I am only at the beginning. LESS IS MORE IN THE PAIN GENRE for every cancer patient...........  I should get my results on Monday when I go into the DR's office.  I'm hoping at that time he has a plan of attack.  I'll keep everyone posted moving forward. 

       

      Have a beautiful balance of the week and weekend everyone.

      Many hugs and Aloha to all!

      Honey

      • Re: Partially diagnosed
        rmd123 Registered Users
        Currently Being Moderated

        Hi Honey,

         

        I keep checking here for an update....

         

        How are you feeling?? I saw that you were set to go back to the dr. yesterday, how did that go?

         

        I hope I am not being too nosy, I just want you to know I have been thinking of you.

         

        Rita

        • Re: Partially diagnosed
          Honey Registered Users
          Currently Being Moderated

          Aloha Rita,

          NOOOO..... Not nosy at all.  I really do appreciate your concern.  I'm felling better daily. THANKFULLY.  I really believe it's the medication and the therapy.  It allows me to better handle all that I'm going through.  I'm still a sore from the BMB, but, It's slowly healing.   This is such a learning process. Every day I get a little bit stronger. 

           

          Yes, I did go to the doctors' on Monday.  My BMB came back clean.. According to him I won't have to endure Chemo.  However, I will need radiation.  I feel so much better. It's literally made my week.  I'm so happy right now that I'm afraid the rug is going to be pulled out from under me.  Finding the new church has helped me.  I've also been able to renew my faith.  I was really angry for some time when I found out I have cancer.

           

          I see the Radiation/Oncologist tomorrow morning.  I'll keep you posted as to what happens. 

           

          Please keep in touch!  I consider all I correspond with on this board as my "FRIENDS" as well as some of my best support.  Thank you for caring I truly appreciate it.

           

          Have a terrific evening

          Honey

  • Re: Partially diagnosed
    Registered Users
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    Yeppers - baby steps, baby steps..... learn how to put one foot in front of the other and control that fall.  That's what walking is you know, controlling a fall from an upright position.

     

    I'm with Jane and Barb - stay off the net (at first anyway).  Good gawd there's so much old garbage out there that will scare the bat snot outta you.  One good site to check out though is  www.nhlcyberfamily.com   Well organized, packed with the latest and greatest  - some in scientificeeze and some in "normal" human language (lol).  Greg knows what it's all about, too - he's one of us, been there, done that, got the t-shirt with the autograph to prove it.

     

    As for the BMB - I still say 99.9% of it is in the touch and technique of the one taking the sample.  I don't think I have any higher of pain tolerance than the next person but for a procedure I deaded a helluva lot - it really was pretty much no big deal.  The NP does probably a hundred BMB's a week - nothing much else - and did a wonderful job of talking me thru it.  She came in and asked if I wanted to know beforehand how it would all go down or just tell me as it was happening.  I prefer just give me the "heads up" a few seconds in advance so we were good and off to the races we went.

     

    Excellent numbing, gentle of a touch as she could given what her mission was.  5 seconds of a mega butt-cramp (the only thing close to pain for me) and it was over.  Slap a nice derma skin banadge over the little hole, pop a couple of ibuprofen and off I left on the 4 hr drive home.  Seriously - it was that simple.  No sedation, no anxiety meds. And yes, I'd heard the horror stories too and was anticipating the absolute worst!

     

    So - find out how many BMB's this person has done and does do in a week or a month.  If the number is pretty high, bet they are pretty good at it (or word would get around and they wouldn't have any patients after while!)

     

    Kind thoughts and pos vibes to one and all as Monday draws to a close

    Sharon

  • Re: Partially diagnosed
    kgirl Registered Users
    Currently Being Moderated

    Wow, Honey, I'm so sorry you had to go through that kind of pain.  I can't help but wonder why some BMB are virtually painless, uncomfortable yes, but not painful) while others are so intensely painful.  Maybe Sharon is right, it's in the "touch" and experience of whomever is doing the procedure, and how unfortunate to be in the hands of one that, well, obviously doesn't have an easy touch.  Having cancer is a tough enough journey without having to suffer through painful procedures, you're right.  Sometimes pain cannot be helped, but if you asked for sedation and were not listened to, that makes me sad.  One thing to be thankful for is you've crossed a hurdle you were dreading (and obviously rightfully so).  Let's hope hard that your bone marrow is not involved.  Either way, you will soon be on your way to the next step in this journey.  Please let us know how your doctor's appointment goes on Monday, and what he/she has is store for battling this ugly, ugly monster called cancer.

     

    Keep your obvious courage at the ready, hold on tight and try and take this one day at a time, one bridge at a time, one prayer at a time.......maybe more.  We are all hoping, and praying that things go a bit smoother for you as you move forward.  Our hearts are with you.

     

    Kgirl

    • Re: Partially diagnosed
      Honey Registered Users
      Currently Being Moderated

      Aloha Everyone~

      Please accept my apologies in not writing sooner.  What a busy week. I cannot even believe that tomorrow is Friday.  OK

       

      Got the results on Monday~Nothing in my bone marrow.  I'm stage 1 and don't know the grade.  If he told me, I didn't hear it at all.  All I remember is "my bone marrow is clean."  oh yeah, and my night sweats are not a result of B-cell fNHL.  He said that I may be going through menopause. This was per my PET scan.  Per the doctor, I have to have radiation(he did say that even after radiation I have a 90% chance of my cancer coming back). I've been referred to a Radiation Oncologist and I see him/her tomorrow.  I'll be better able to elaborate more then.  I'm a bit confused.  My peer to peer says that this is great news.  Believe me, I agree.  It just seems funny that after all the talk about chemo, now, no chemo? All I am really sure of is "it's not in my marrow."  I'm still exhausted more than what I would consider normal and these night sweats are too much.  I see my regular DR. on the 21st.  I will for sure bring this up at that time.  I'll let everyone know tomorrow evening what transpires  at the Radiation oncology appt.  

      I still have 2 bruises and scabs on my lower back from the BMB.  It's still sore, when I get in the car is when it's the most tendar.  I'm guessing as soon as the brusing goes away I should be pain free then. 

      I have to say, I do feel better having some answers.  I know I still have a long road ahead.  At least I can now see the road. 

       

      Should anyone with B-cell fNHL stage 1 read this, could you please share as I'm not feeling right about "Just radiation".  I know I should JUST BE THANKFUL, but, something in the back of my mind won't let me relax about it.  Maybe it's just me.  Thoughts???

      I'll write more tomorrow.

       

      Have a beautiful evening all

      Tons of Aloha,

      Honey

  • Re: Partially diagnosed
    kgirl Registered Users
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    Hi Honey, how are you??  How are things going?  When you get a chance, please let us know how you're doing and if there is anything or any way in which we can help.  Thinking of you always.

     

    Kgirl

  • Re: Partially diagnosed
    kgirl Registered Users
    Currently Being Moderated

    Honey, this is WONDERFUL news!!!!!!!  I couldn't be happier for you!!! The radiation vs. chemo will, I'm sure, become clearer to you after your appointment with the

    radiation oncologist.  Keep that rug firmly under your feet sweetie.  What a GREAT Christmas gift!!! Looking forward to your next post!!!

     

    Kgirl

     

    • Re: Partially diagnosed
      Honey Registered Users
      Currently Being Moderated

      Aloha All,

      GREAT NEWS TODAY TOO.    Looks like I will get 3 weeks of radiation.  I begin the journey next week. Monday is the CT scan.  Couple days later I go in for the positioning following that will be the radiation.  Yes, Kgirl what an absolutely WONDERFUL Christmas present.  It really has made me happy. 

       

      I do keep in mind, the fact that this could come back.  I prefer to look on the brighter side. This radiation will kill all the cancer in my body and it will all go away.  AMEN!  I still plan on writing.  Maybe someone might find some comfort in my situation and all that I've been through.  I do plan on writing about radiation.  I don't expect a picnic however, I feel much better about this than I did about Chemo. My disposition is soooooooooo much better. I believe it's a culmination of both the news and the anti depressants. 

       

      To all my precious friends Have a beautiful weekend and be "grateful" for all the positive things. 

       

      Much Love & Aloha

      Honey

       

      I'll write more Monday.

      • Re: Partially diagnosed
        rmd123 Registered Users
        Currently Being Moderated

        That's so great, honey. Are they still willing to work with you regarding the financial side of things, too?

        Sounds like soon this will be all behind you. Keep the faith!!

        Rita

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