I'm "OK" Pinks, sorry for the worry's :(

pinkkari09
pinkkari09 Member Posts: 877
Hello everybody, sorry for worrying you, but since I've returned from Cancun, I've been falling apart.
Cancun was AMAZING, and that time with my two kids was priceless, tears fall as I write about it because it was the most precious time I've had with them in all our lives. However, my health has been going downhill rapidly over the last couple months, in fact I was worried there for a bit that I might not make Cancun, but by the grace of God, I made it. With the exception of osteonecrosis developing in my jaw while I was there, I did well.
As for my health now, none of the chemos seem to be working, I've been through a couple more since I last posted. My tumors are growing in my hip, so I've seen an orthopedic to determine stability and for some cortisone shots. The tumors on my spine are growing rapidly, I've been put on Fentynol patches to control the pain along with palliative care assistance. I've developed osteonecrosis of my jaw which has been extremely painful and has swelled all the way through my neck, I'm now on 3000mg a day of antibiotics to combat the infection. This is due to the Xgeva shot I was receiving that was really helping me and I now can no longer get that. I was given one unit of blood on Tuesday this week, then another unit on Wednesday because my counts are way down. I'm currently getting Halaven (spelling?) for chemo but the scans are saying it isn't working.
My Oncologist sat down with me and my daughter (my daughter is an RN on the oncology/transplant wing of my local hospital) and told us she's really worried, we have gone through a lot of chemos and the cancer keeps growing, she told me "if there are things you want to do, you really need to get them done" and that she by no means will give up on me but it's not looking good (I love my Oncologist, she has always been straight up with me). She is now looking into Mayo clinic for any trials but most of the trials have a high peripheral neuropathy s/e so they wont take me beings I'm already grade 2. I've looked into MD Anderson, they gave me no reply and wanted 15,000 in addition to my insurance to even consider me and have nothing they can do for me that my Onc isn't already doing. I try to keep this all inside and pretend like I'm doing ok but I can't do it anymore. Last week my kids and I sat down with palliative care and some social workers to go over hospice care and set things up so we have my care in order before I'm not able to state what I want, that was the HARDEST thing I've ever had to do, and I'm not done yet, I have additional appointments with them. I'm am grateful that I have my marbles yet so I can state what my wishes are, it wasn't so for my Mom, she went from ok to not coherent and it was all left up to me and my brothers. My kids wont have to worry about that, it'll all be written, as hard as it is, I have to get it done. As it sits right now, my Doc said she will keep trying new chemos as long as I'm willing, but she also knows that I'm at the breaking point of saying I've had enough, I'm tired of being sick, I'm tired of blood transfusions, I'm just plain tired. I'm sorry to dump all this on here, but I needed to get it out and I know all of you understand. I'm also VERY worried about Laurissa, so if anyone finds anything out please pass it along to me. Once again, sorry I don't have any good news, and I hope and pray for all of you every day, even though I'm not on here like I'd like to be, you are all always on my mind and in my prayers.
God Bless,
Kari
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Comments

  • serenity92
    serenity92 Member Posts: 84
    Kari, I am so sorry that you
    Kari, I am so sorry that you are in this scary, awful place right now. I know you dont know me but I am praying daily for you to have peace in your heart. I am thankful that you have support people around you right now. After multiple cancers myself I am always trying to think of what is important to 'get done' to 'get said' etc.. I think the most important thing you are already doing is giving your kids a legacy of love. No matter what happens in the coming months or years they will always have peace in their hearts knowing their mom adores them. I pray for your strength, for you to not have pain and for your healing. God bless. Jayne
  • carkris
    carkris Member Posts: 4,553 Member

    Kari, I am so sorry that you
    Kari, I am so sorry that you are in this scary, awful place right now. I know you dont know me but I am praying daily for you to have peace in your heart. I am thankful that you have support people around you right now. After multiple cancers myself I am always trying to think of what is important to 'get done' to 'get said' etc.. I think the most important thing you are already doing is giving your kids a legacy of love. No matter what happens in the coming months or years they will always have peace in their hearts knowing their mom adores them. I pray for your strength, for you to not have pain and for your healing. God bless. Jayne

    jayne that is so true. kari
    jayne that is so true. kari has given her family a legacy of love. I am praying they find a drug that will work on the cancer , and you have pain relief and peace.
  • tommaseena
    tommaseena Member Posts: 1,769
    carkris said:

    jayne that is so true. kari
    jayne that is so true. kari has given her family a legacy of love. I am praying they find a drug that will work on the cancer , and you have pain relief and peace.

    Kari
    Kari,
    I will keep you and your family in my prayers and hope your oncologist can get the right chemo/meds. I don't know what to say right now. I am glad that you were able to go to Cancun with your family and enjoy yourself.

    Love,
    Margo
  • MAJW
    MAJW Member Posts: 2,510 Member

    Kari
    Kari,
    I will keep you and your family in my prayers and hope your oncologist can get the right chemo/meds. I don't know what to say right now. I am glad that you were able to go to Cancun with your family and enjoy yourself.

    Love,
    Margo

    Nothing...
    Nothing I can say will help much,...know, please, that you are in the prayers of many...I am so glad your trip to Cancun was a memory maker for all of you.....

    I wish you peace, strength, love and courage....which ever you need most...at any given time...
    Big hugs, Nancy
  • skipper54
    skipper54 Member Posts: 936 Member

    Kari
    Kari,
    I will keep you and your family in my prayers and hope your oncologist can get the right chemo/meds. I don't know what to say right now. I am glad that you were able to go to Cancun with your family and enjoy yourself.

    Love,
    Margo

    Sending prayers
    that they find something that will work and help. Glad you had the time in Cancun!
  • Brooklynchele
    Brooklynchele Member Posts: 123
    Not happy with your news
    Kari,

    I am so sorry to hear this. I don't know where you live but there's a doctor outside of DC that has a private oncology practice. He used to be the head of oncology at Georgetown. Anyway, since he's not affiliated with just one hospital (I believe he's admitted to 3 in the DC area) he has access to every kind of chemo available (whereas affiliated docs can only offer what their hospital can give). He handles all the special trials from NIH. If you're interested his name is Dr. Frederick P. Smith. I'll post the info from the Board of Medicine if you're interested. Hugs, Michele


    Smith, Frederick P
    License and Education License No.: D33293
    Accepts Medicaid: No
    Graduated: 1973
    License Status: Active
    Date License Issued: 02/20/1986
    License Expiration: 09/30/2013
    Primary Practice Setting Frederick P Smith MD PC
    5454 Wisconsin Avenue
    Suite 1300
    Chevy Chase
    MD 20815
    Public Address 5454 Wisconsin Avenue
    Suite 1300

    Chevy Chase
    MD 20815

    Graduated from: ST LOUIS UNIV SCH OF MED

    Postgraduate Training Program Concentration
    • Georgetown University Hospital, Washington, DC Internal Medicine, Medical Oncology
    • Georgetown University Hospital, Washington, DC Internal Medicine

    Specialty Board Certification
    by ABMS/AOA - as reported by licensee
    • Internal Medicine, Medical Oncology
    • Internal Medicine

    Self-Designated Practice Area
    • Medicine, Internal [General]
    • Oncology,Medical [General]
  • mom62
    mom62 Member Posts: 604 Member
    Grace
    Kari,

    I admire your grace in this situation. I too have done things already so people won't have to worry and I'm not even near the point you are. It's important to make sure your loved ones are taken care of and not wondering what you would want. It takes great strength to admit you may not wnat to keep on with treatment and choose to live a quality of life that you want. I think you are brave and glad you had your time with your kids in Cancun. Precious moments like that come once in a lifetime and they will always remember them. Thinking and praying for you. I wish you all the best in your continued journey whateve you may choose. Prayers and God Bless.

    Terry
  • Dot53
    Dot53 Member Posts: 239 Member
    Hi Kari,
    I am so glad you

    Hi Kari,

    I am so glad you had a wonderful time with your kids in Cancun..just wish you had better health news.. As always you are in my thoughts and prayers.. Please continue to check in and let us know how you are doing...

    Sending you cyber hugs...

    Dot
  • Aortus
    Aortus Member Posts: 967
    Kari, you are heroic!
    Kari, I can't even imagine (and we both know I'm no newbie to this) what you are going through emotionally and physically. But it's even more amazing to me how you STILL keep worrying about everybody but yourself. Please just look after yourself! You are so important and so precious to so many more people than you can even imagine!

    Love,
    Joe
  • carkris
    carkris Member Posts: 4,553 Member
    Aortus said:

    Kari, you are heroic!
    Kari, I can't even imagine (and we both know I'm no newbie to this) what you are going through emotionally and physically. But it's even more amazing to me how you STILL keep worrying about everybody but yourself. Please just look after yourself! You are so important and so precious to so many more people than you can even imagine!

    Love,
    Joe

    I hope you can feel how much
    I hope you can feel how much we care about you, and our concern. Chenheart isnt able to post here (computer issues) and wants to send her love and prayers.
  • MAJW
    MAJW Member Posts: 2,510 Member

    Not happy with your news
    Kari,

    I am so sorry to hear this. I don't know where you live but there's a doctor outside of DC that has a private oncology practice. He used to be the head of oncology at Georgetown. Anyway, since he's not affiliated with just one hospital (I believe he's admitted to 3 in the DC area) he has access to every kind of chemo available (whereas affiliated docs can only offer what their hospital can give). He handles all the special trials from NIH. If you're interested his name is Dr. Frederick P. Smith. I'll post the info from the Board of Medicine if you're interested. Hugs, Michele


    Smith, Frederick P
    License and Education License No.: D33293
    Accepts Medicaid: No
    Graduated: 1973
    License Status: Active
    Date License Issued: 02/20/1986
    License Expiration: 09/30/2013
    Primary Practice Setting Frederick P Smith MD PC
    5454 Wisconsin Avenue
    Suite 1300
    Chevy Chase
    MD 20815
    Public Address 5454 Wisconsin Avenue
    Suite 1300

    Chevy Chase
    MD 20815

    Graduated from: ST LOUIS UNIV SCH OF MED

    Postgraduate Training Program Concentration
    • Georgetown University Hospital, Washington, DC Internal Medicine, Medical Oncology
    • Georgetown University Hospital, Washington, DC Internal Medicine

    Specialty Board Certification
    by ABMS/AOA - as reported by licensee
    • Internal Medicine, Medical Oncology
    • Internal Medicine

    Self-Designated Practice Area
    • Medicine, Internal [General]
    • Oncology,Medical [General]

    I have to add...
    I need to comment on something in the above post...that one's oncologist is LIMITED to what his hospital can offer....that isn't true at all...any and all oncologist's have access to every trial available or anything new on the horizon...now whether or not his patient qualifies is a different story...but to say one is limited to what his cancer center or hospital has to offer is simply not true...I know this
    Personally...I was in a clinical trial this past summer in conjunction with Sloan Kettering in NYC....I'm no where near NYC....so that statement is in fact not true...
  • Brooklynchele
    Brooklynchele Member Posts: 123
    MAJW said:

    I have to add...
    I need to comment on something in the above post...that one's oncologist is LIMITED to what his hospital can offer....that isn't true at all...any and all oncologist's have access to every trial available or anything new on the horizon...now whether or not his patient qualifies is a different story...but to say one is limited to what his cancer center or hospital has to offer is simply not true...I know this
    Personally...I was in a clinical trial this past summer in conjunction with Sloan Kettering in NYC....I'm no where near NYC....so that statement is in fact not true...

    Clarification
    I am sorry if I was not completely clear and/or accurate to your liking. In the area in which I live, the oncologists may only offer what their affiliated hospital offers as far as treatment goes. Therefore if the hospital does not offer a particular chemo combination, the doctor cannot order it for his patient. So MAJW while what I said may not be true where you live, it is absolutely true where I live. I was simply trying to offer some alternatives to our pink sister for treatment options since the doctor I referenced had access to everything NIH offers. There was no reason to get nasty regarding my post without knowing all the facts I was referring to.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    carkris said:

    I hope you can feel how much
    I hope you can feel how much we care about you, and our concern. Chenheart isnt able to post here (computer issues) and wants to send her love and prayers.

    It is always difficult to be valiant in the face of
    adversity. I so admire your Grace and Dignity, Miss Kari.

    I pray, and hope continued health, wisdom and healing for you.

    Going it alone, as you like to do -- sucks, so I am happy that you
    have shared with us, as well as your children.

    Hoping a little of your stress, and burden has been lifted a little by
    the love, and support of our SISTERHOOD and family.

    I recall that photo of you last year, wearing a cowboy hat and sporting a
    T-Shirt stating 'fxxxx cancer'! My exact sentiments, dear Sister in
    PINK!

    Gentle hugs, and much love to you and your two children.

    Vicki Sam
  • grams2jc
    grams2jc Member Posts: 756
    Kari I am so glad you got to go on your trip
    What a wonderful time you must have had. I am sorry that your chemos keep wearing out on you and I too understand about getting things written down and in order. My hope for you, and me, is that we must update those plans and wants at least 5 times before we need them.

    Jennifer
  • MAJW
    MAJW Member Posts: 2,510 Member

    Clarification
    I am sorry if I was not completely clear and/or accurate to your liking. In the area in which I live, the oncologists may only offer what their affiliated hospital offers as far as treatment goes. Therefore if the hospital does not offer a particular chemo combination, the doctor cannot order it for his patient. So MAJW while what I said may not be true where you live, it is absolutely true where I live. I was simply trying to offer some alternatives to our pink sister for treatment options since the doctor I referenced had access to everything NIH offers. There was no reason to get nasty regarding my post without knowing all the facts I was referring to.

    I wasn't being nasty..
    I simply stated a true fact....it wasn't that it " wasn't to my liking"...sorry that you took it that way...I see my oncologist next week...I will be asking him about this...
  • chenheart
    chenheart Member Posts: 5,159
    My ♥ is with you
    My ♥ is with you sweet Kari...I wish as always that I had The Magic for all of us.
    The Kindreds have given you all of their hopes, love, wishes, prayers and options for physicians who may have different trials and or drugs which may help you. I love that you took the time to be so calm and eloquent with your oline family~ I can only begin to imagine the Legacy Of Love you have taught your physical family...what a blessing you are to us all.
    I am hoping for a miracle...and why shouldn't I?

    All blessings to you, for Hope, for Remission, for a Cure.

    Hugs,
    Chen♥
  • linpsu
    linpsu Member Posts: 747
    Kari
    I was so happy to see the wonderful pictures you posted with your kids in Cancun. It looked like you had a trip of a lifetime. But I am so, so sorry to hear of all of your medical complications. You are so strong and brave! Know that we are all surrounding you with love and prayers.
    Hugs and love,
    Linda
  • sbmly53
    sbmly53 Member Posts: 1,522
    Dear Kari,
    Others have so eloquently expressed what I feel - sadness, love, amazement, hope. Awed by your grace, strength and dignity. You and your family are in my heart and my prayers. Thank you for posting. You are an inspiration.

    I come from a family of 'huggers'. In difficult times, we hug hard, fast & tight. We pat each others backs, or do the gentle circular motion back rub while hugging and speaking reassuringly to the 'huggee'. So the point of this, Kari, is to give you that hug - big and warm and full of love.

    Sue
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    linpsu said:

    Kari
    I was so happy to see the wonderful pictures you posted with your kids in Cancun. It looked like you had a trip of a lifetime. But I am so, so sorry to hear of all of your medical complications. You are so strong and brave! Know that we are all surrounding you with love and prayers.
    Hugs and love,
    Linda

    Hi Kari
    It's so good to hear from you even if your news isn't so good. Thank you for checking in with us and sharing. I'm so happy you were able to make the trip to Cancun with your children. I will add my prayers and hopes to the others for you.
    Love,
    Suzanne
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    A Miracle for Kari
    Sweet Kari -- I was glad to see your name when I signed on. I am happy you had a great time in Cancun. You deserved the break, away from everything else. Great you enjoyed it.

    I wasn't happy to read about your progress with the chemo. And I can't imagine how you feel knowing this. It would be very difficult for anyone. But I will continue with my prayers for your recovery. I am not loosing faith, and I PRAY you DON'T either. No matter what the results may be, in my heart I want you to find a better chemo regimen and do well. And there is no room for anything else. Everyone here is praying for you. And we think of you often. We're all wishing things become better for you - and sending you positive thoughts. I know this must be really hard for you. But we are here holding your hand. We are here.

    I pray for a miracle for Kari.