willow

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Viewing 15 posts - 1 through 15 (of 660 total)
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  • in reply to: Nine Years ! #84962
    willow
    Member

    Awesome, Pat! Nine years! Your mentoring is commendable even if sometimes heartbreaking . You’re remarkable!

    in reply to: New member — Wife recently diagnosed with ICC #72337
    willow
    Member

    Dear Jason,

    You, Andrea and your boys have been in my thoughts and prayers daily. While I do not know what it is like to walk a spouse through cancer treatment, I do understand how difficult it is to keep a brave face and positive attitude going with devastating new developments like the referred pain, side effects of pain meds and now the malignant ascites. I can’t put into words the PROFOUND desire to take your beautiful wife’s suffering away but I do understand that feeling as I had that kind of love for my sister, Nicole. You are a beautiful example of a husband and father. From the beginning, you have provided Andrea with what she needs the most: love, physical comfort and emotional support (as well as logistical support). It must have been very difficult to attend my sisters memorial but you and Andrea gave of yourself and came.
    This is just another example of your selfless love of Andrea. Our family sure appreciated your presence as well.
    Your sound treatment decisions made together with Andrea and based on extensive, research help not only Andrea but all those in the CC family because you chose to share them here. Yet, as I understand all too well, the challenge with limited options make it feel sometimes like you are flying by the seat of your pants and managing things literally one day at a time. I know I am “preaching to the choir” with all this but really just want you to know you are not alone. I’m hoping the current chemo will knock the cc down and with that reduce the ascites. Is Andrea on a diuretic? (Those can have side effects like dehydration/electrolyte imbalance) but sometimes helpful. Also, I pray the genetic testing can provide more tx options soon. Are you looking at the PDL immunotherapy trial at UCSF? Please feel free to call if you want to ask about it or any other questions.

    Sara

    in reply to: Lazarex Cancer Foundation – help with clinical trial cost #84587
    willow
    Member

    They have limited resources but can help w/ some travel and hotel expenses or a little of medical (not usually medical) exp. Based in the CA Bay Area.

    in reply to: Today my life, my world, starts over again #84506
    willow
    Member

    Congratulations on finishing chemo, Julie!

    in reply to: My sweet Brother #84527
    willow
    Member

    Sandy,
    I am so sorry for the devastating loss of your brother, Mark. My heRt goes out to you and I relate to your loss.
    Willow

    in reply to: 5-year scan #84347
    willow
    Member

    Congratulations, Randi!!!!!!

    in reply to: Spending precious final hours with my sister #83778
    willow
    Member

    Thank you all for your comforting words. So glad to hear from you, Percy.
    Love
    Sara

    in reply to: Spending precious final hours with my sister #83767
    willow
    Member

    Nicole passed away last night while we were all sleeping. Sometime around 4am we guess. She looks beautifully peaceful.
    Out w my nephew and older sis. My nephew is very sad but we know he has huge support and will be ok.
    Love Sara

    in reply to: Spending precious final hours with my sister #83764
    willow
    Member

    Thank you.

    in reply to: Spending precious final hours with my sister #83761
    willow
    Member

    Thank you Cathy, Lainey and Pam.
    Pam, I’ve thought of your intense ordeal in the last days with Lauren often. It was very different from hospice in that everything under the sun was tried to keep her with us here in the earthly realm. Hope you are doing ok and at peace in your heart.

    in reply to: Clear scan four years! #83746
    willow
    Member

    Fabulous… Congratulations, Kathy! So glad you had a big fun European adventure this summer. Really nice to hear good news!

    in reply to: Spending precious final hours with my sister #83757
    willow
    Member

    Thank you, Julie, Marion, Lainey, Darla and Catherine. It’s 3:44am and she is still with us….sleeping soundly though snoring …Cheney-stokes. Hospice nurse came late last night when I was out for a late dinner as my brother in law panicked a bit. My sis and I had given the methadone (long acting pain med) and morphine (short acting breakthrough med) too close together and she started shaking and breathing super fast/noisy. My two bro in laws and nephew were scared so called the hospice out. By the time the nurse came, Nicole was resting comfortably again so she just reassured us and said to give haldol every 4 hours or as needed (new med to replace lorazepam). Feel bad having given too much too close together. I feel like there are similarities to our Dads passing last year but he was in assisted living so I had a lot more help with the admin of meds, changing sheets/clothes etc. still took daily management but it was as if I had a team helping. Now we are a small team with a young kid watching and helping too with little things. He is so good about showing his affection to his Mom, though due to her frailty, mainly can only kiss her hand or head. He also gives frequent big cheerful hugs to all of us throughout the day and then goes about his business.
    When the pain meds wear off, Nicole has a few brief moments of wakefulness but can’t speak. We jump on the opportunity to tell her we love her, wash her with the moist wipes, clean her mouth with the sponge sticks etc. She seems comforted but soon tired. We also read cards to her that people have sent.
    It’s heavy on my heart that my sister and bro in law made it clear early on they don’t want a lot of visitors, tears or “drama” during this stage, so two of my sisters are essentially not “allowed” to come much at all. They are naturally sad. Our brother is back in NYC and can’t come again till the memorial. He flew out a couple of times this year for extended visits to spend time with the family and recently drove his motorcycle across the country, visited briefly but had to get back to work.
    Well, I’d better try to sleep some more. Take care and thanks for your support.

    in reply to: CLEAN SCAN #83375
    willow
    Member

    That is SO great to hear, Porter!!! You deserve a fresh start free from CC! I know they are always cautious about saying people are “in remission” but I wouldn’t be surprised at all that you are is great shape after all you went through over the past year. I share you Tears of joy. Never ever feel guilty sharing good news!
    Love
    Sara (Willow)

    in reply to: My Introduction #80215
    willow
    Member

    Wonderful news…thanks fir sharing, Matt!

    willow
    Member

    Thank you everybody.

Viewing 15 posts - 1 through 15 (of 660 total)
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