Dismiss Notice
Hi Guest! Welcome to our forums!. We are glad you joined us. If you aren't a member already, please Sign Up! Today!

Never, ever think "I just have breast cancer"!!!!

Discussion in 'The Safe Harbor' started by MARIPOSA, Mar 11, 2009.

  1. MARIPOSA

    MARIPOSA Guest

    My mission is to now warn others to be extra vigilent in keeping track of any changes on your body. Several weeks ago I discovered that my breast cancer had metastasized to many parts of my body ~ several organs, my eye, by brain, and today we found out to several bone sites as well. Just because the mammograms all came back 'clean' means nothing when you are talking about breast cancer. Heck, it is now everywhere EXCEPT in my breast! The only way to detect the spread of this insideous disease is to have a complete body scan yearly, and no health coverage follows this logical protocal. It was only because I am diligent to follow up with every single dot and squiggle change on my body that we were able to biopsy that nodule on my neck and determine the cancer had metastasized. Each subsequent scan revealed more horrors. So please read my latest journal entry and take careful notes.

    I am not bitter, and have not given up yet. I've just become more and more grateful that I don't actually feel 'sick' as well as for every second I have left to work on my projects. One of my 'long range goals' is to meet that Duck Crew for a mini meet in August in San Francisco before they head up to Alaska.

    March 10, ’09 Dr. Lin Went today for my follow up on the PET scan I had about a week ago. (using radioactive isotopes injection for contrast) Seems the cancer has indeed metastasized not only to several organs and a couple places in my brain, but several places in my bones as well. Right now I am not a good candidate for my regular intravenous chemotherapy because of the complication of the blood brain barrier. This is what Google says about this:
    The blood – brain barrier “It can be difficult to treat brain tumors with chemotherapy because of the blood – brain barrier. This is a natural filter within the body. It only allows certain substances through from the blood to the brain tissues. This is a natural defense mechanism. It is designed to keep harmful substances out of the brain.â€Â

    ~~ So as of now, the ball is in my court. Sad to say, I am now in the category of being “terminalâ€Â, which basically means that my cancer is no longer curable. The oncologist (cancer specialist) suggests that instead of my weekly infusions of Avistan and Taxol I could begin taking a pill form of chemo called Xeloda (an antimetabolite) which would prolong my life a little. I would take several pills a day for 2 weeks (no need to go to the hospital for this) and have a week off. Not sure how long this cycle would continue. The probable side effects are do-able, diarrhea, low blood counts, and my skin turning dark from sun sensitivity. I could also begin an injection of Zometa as a bone treatment (15 min infusion every 3 weeks) We will wait 7-10 days before making these decisions. This gives me time to rest up from previous chemo and radiation tx. I will watch closely for all the symptoms I am feeling and try to figure out which might be from the brain cancer itself and which are from the treatments. Mostly I have blurry vision, am often dizzy, somewhat nauseated, lethargic, fatigued, and have a tough time concentrating or remembering little details, like words. BTW, the radiation munchkins gobbled up most of my thinning hair so we shaved of the raggedy remains on Sunday. Now I can put a soothing cream on my scalp cuz this hair loss procedure is surprisingly extremely irritating, somewhat painful and my scalp is itching like crazy.

    I am very disappointed that my vision has not improved by now from the 2 weeks of daily radiation. I really do believe that part of my dizziness is from this continual blurriness but my primary care doctor gently suggested that it is probably due to the cancer activity in my brain. I feel as though I’m always in a foggy tunnel and if I move too quickly I get very dizzy. An appointment with the eye doctor is high on my agenda to get a better picture of the progression of the choroidal growth in my eye to see if it is shrinking at all.

    The other choice that I need to face is taking no more chemo type drugs and having hospice come in and take care of my basic needs. I do not even want to consider this option at this time. Thankfully I do not feel that SICK, just dizzy and fatigued mostly. Interestingly, the doctor asked me if I spend more than 50% of my time in bed. Not yet. Guess that should be one of the main points to consider when the time comes to reassess everything again further on down the road.
    So on the way home from the hospital today we discussed all the changes I am now facing. It sucks that I must consider all of this, and I’d much rather crawl into bed and pull the covers over my head. So tomorrow I’ll just make my to do list of very important things to do, and we’ll just plug away at accomplishing what we can and hopefully will be better equipped to make my life changing decision in about a week.

    FYI, I was denied any Social Security disability because I had not worked the required 40 quarters during the past 10 years. BUT I do qualify for early retirement immediately. Wish it didn’t take so long to process. I told E that he needs to apply for this as well since they keep cutting back on his hours at work. We are just grateful that he is currently employed at a job he enjoys so much, even if it is only part time. And all of my medical expenses are covered by the special MediCal breast cancer program. No matter how my cancer progresses, it is categorized as metastasized breast cancer.

    My next update will be after I meet with my doctor to discuss Chemo pills vs Hospice. Meanwhile I’m going to tackle that dollhouse with a renewed vigor. Thank God I have something beautiful and magical to focus on right now!!! My sister and I decided that if these projects are what is keeping me going right now then I should order several more houses to work on. LOL I agree~~

    Hugs, Ronda/Mariposa :loveya
     
  2. ShipMaven

    ShipMaven Guest

    Ronda - I wish I could find adequate words. =cry

    God bless, dear lady. May you make the right choices.

    Mary Ann
     
  3. conniecat

    conniecat Guest

    Rhonda I am so sorry you have to face more horrors, but I like your never give up attitude. Can they not do radiation for your bones?

    You know you can come here for virtual hugs when you need them, and that we all are rooting for you. Please keep us informed of what you plan to do. Hugs, connie

    Phillippians 4:6,7, 13
     
  4. seamom

    seamom Guest

    Dear Ronda,

    I shed tears this morning reading your latest installment, then started to think what I could say to you on this next leg of your journey. You gave me strength as usual from your messages. For now I write:

    It's my continual wish that there was a publisher amongst the C@'s who could step up and publish your journals posted in the past as a living tribute to be shared by more. Repeatedly over the years, you have given us hope, inspiration, insight, a time to reflect on our emotions, a person to bring us face to face and discuss the word 'cancer' which people shudder even to think of, intimate knowledge to help others through their trials of chemo..........this and much more which we have been able to use in our own lives. I lost my uncle less than two weeks ago to brain cancer. He was lucky not to suffer too long but it seemed so swift to us on the other side of the ocean without getting all the details of what he went through, without being near. He was much older than you and didn't have 'youth' to help in his fight.Today, you've helped me, once again, understand what he was going through. Thanks again for that and helping me help my girlfriends and family who have fought breast cancer with helpful words from you.

    Too difficult to say goodbye at any time, but you've given us an opportunity to tell you what you've meant to us in life and I'm hoping even more C@s come and tell you that have been too shy before. Not sadly but in joy of having shared time with you...a celebration of you. If there's a reason why many of us will be speechless. it's because we've told you so many times how much we value your friendship, honesty and good spirit and it's difficult to find new words...get out the thesaurus or just give a hearty round of applause to cheer her on! :) How often do people save those words til it's too late. You are like Rembrandt who painted the Mona Lisa but having a chance to get feedback of greatness in your own time.

    Hmmm...maybe I ramble at this early hour and I'm getting a little carried away......tripping over words and thoughts.......summing up years of spending time on the internet we've shared with you. Again I raise a glass to you (okay...it's my coffee mug). In your darker hours, you bring sunshine and celebrate life in your words...........here's to Ronda!!! Let's celebrate that we've met such a wonderful soul!

    An invitation to the rest of you to celebrate Ronda...
    With love and admiration,
    Susan, alias seamom
     
  5. KathyC

    KathyC Guest

    I am so very very sorry to hear this. You have given so much to all of us with your words of wisdom. Please know that as you begin this leg of your journey that we are all here for you. You are constantly in my thoughts.
     
  6. reggae

    reggae Guest

    Dear Ronda, you are an amazing woman! I do appreciate you and especially your "mission to stay on top of Breast Cancer"....You've given me that shove I needed to get my butt back into the doctor.

    I will keep you in my prayers that the proper decisions and treatment will help you. God bless...
     
  7. debowah

    debowah Guest

    Thank you for sharing your lessons learned at such a high cost. May you find peace and guidance in making the right decisions for yourself. Prayers continue....... St Peregrine.......
     
  8. JANPEP

    JANPEP Guest

    Oh Rhonda, I'am so sorry to hear such news. You have inspired so many people with your words. I will keep you in my thoughts & prayers that God will be with you in what ever you decide.
    I bet your doll houses are beautiful & made with such love.
     
  9. popcorn

    popcorn Guest

    You continue to inspire me with your take charge and continue attitude. And many thanks for allowing us an insight of your journey.

    Liz
     
  10. TexasSue

    TexasSue Guest

    Words are not enough to tell you how wonderful your attitude is and how much just reading your words can enlighten. I feel you are so much a part of this community that I'm sure you already know that any of us will do anything we can to help you. Many Many Prayers and Hugs come your way.
     
  11. maw

    maw Guest

    Rhonda so sorry to hear how your illness has progressed. I really do wish someone could publish you postings to the Addicts. They are definilty a postive approach to your illness and dealing with life. I am so glad I did get to meet you in SF during the Amigos cruise and will be watching for you this Aug. Sometimes I let the aging process get me down but you make me thankful I still have so much good health. Hugs. Maw
     
  12. nieciez

    nieciez Guest

    Rhonda, my thoughts and prayers continue with you as you make further hard decisions....thank you for the courage for sharing your painful journey with us so that we may learn from it. Huggs and love,
     
  13. H2O babe

    H2O babe Guest

    You remain on my prayer list and in my thoughts.

    I have been wondering how the doll houses are coming.

    May you find the peace and comfort you need to continue on this journey.

    K.
     
  14. Karry

    Karry Guest

    Seamom/Susan, what a BEAUTIFUL post. Ronda, may God Bless You...you are such an unrepeatable miracle and we are all lucky and thankful to know you. =hug =hug =hug
     
  15. Lisa63

    Lisa63 Guest

    Ronda, words escape me, as I haven't fully absorbed what you've written. You know this is very close to me. Yet, I can tell that you are facing this with the same bravery you have shown in the past, and I am confident you will make the right decision. Thoughts and prayers continue.
     
  16. kpopperwell

    kpopperwell Guest

    Your thoughts have touched me personally and I will keep you in my prayers.
     
  17. tango55

    tango55 Guest

    Rhonda you are a truly brave and inspiring woman! There are no words to express how we all feel - thank you for coming to us to share your painful journey. You give hope and strength to so many!

    Terry
     
  18. GloBug

    GloBug Guest

    Ronda, I got your email at my house, in the middle of dealing with my friend Angela and her fight with terminal brain cancer. I'm sorry, your email went to the back of my memory (her surgeon OD'd her on Coumadin, and she bled out yesterday. Scary day...)

    I don't have words to tell you how sorry I am to hear your news, except to say that it sucks - big time. Pretty graphic, but there it is. I am sure you and your loved ones feel the same way. Your courage in the face of this is amazing. But know that as you share this with us, we travel this road with you. Please keep posting, so you don't travel this alone.

    A customer I hadn't met before came in the shop today, and for some reason, strangers always talk to me about these things. Her cancer is back and she's fighting it again. I told her about my friend Angela, and she told me her friend was diagnosed with terminal brain cancer also, and had it in her bones, liver, all over... and then it disappeared. It's just gone. There is always hope, never lose that Ronda, because without hope, you honestly do have nothing.

    But from us, you have an abundance of hugs, kisses, love and prayers coming your way every single minute of every single day. Wrap your heart around that, and know we care so very very much.
     
  19. What a sweet brave woman you are,as I stuggle with my sciatica thinking I will never be well,I try to take a page from your book,and do all the options that are open to me,and try to remain positive like you,you are a inspiration to us all,have you tried calling the Cancer place they show on TV,explore all avenues girl,never have I seen such fight and grit from one person. You are truly loved by all of us addicts,keep shining for us all,and thanks for the words you type that give us all so much comfort,you are one in a million! Much love,Korina
     
  20. Calgon1

    Calgon1 Guest

    This realy sucks! I sit here with tears in my eyes, trying to think of the words that just won't come. Let me correct that. The words come, but somehow they are all so inadequate. Yeah, me. Calgon. The one who is never at a loss for words ... mute. More later, when I develop even a small part of the strength you have and I can get my thoughts together ....

    We love you and will be seeing you in San Francisco.
     

Share This Page