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bunny

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  1. Paula,

    I'm so sorry for your loss. I knew your dad was going down a road similar to Suki's, but this must seem awfully fast for you. My belief system is such that I believe people who are terminally ill with cancer or another progressive fatal illness have a lot of control over the the circumstances of their death. I believe Suki waited for me, my brother and my father and our respective partners to be with her before she died. So I believe your father wanted to be alone when he died -- not out of any lack of love, but just because that was his preference. This might be hard to hear and it's OK if you think I'm full of baloney, but that's what I believe. Maybe in his heart he thought this was easier for you, maybe he was just very private. Who knows. I do know you have enough of an emotional rollar coaster to ride in the coming days, weeks and months (years?) that you don't need to add second-guessing the details of his death. His suffering is over, which is the great news. I feel for you and the rest of your family whose missing him (yes, suffering, I am really suffering today, especially) has only just begun.

    Love and peace to all of you.

    xo

    amie


  2. I know I come late to this, but I had a LEEP for a carcinoma in situ (from HPV -- it's the "common cold" of STDs) in 1999 and have been clear as a bell every since. The LEEP may or may not have contributed to some of the pre-term labor and short cervix complications I had when I was pregnant with Levi, but otherwise it's been 100% fine since then. The HPV is gone, and I've had normal PAPS (every 3 mos., then every 6, now every year) since 1999. Try not to worry.


  3. I am so sorry, Kasey. Your post breaks my heart. And I share your anger, though obviously it's different.

    You are more than entitled to let us, and others, fight for you for a while. Lord knows you've done enough. I can only offer you this as a glimpse of hope for future fights, should you so choose.

    You've probably heard it before. The man who is walking along a beach where thousands of starfish have washed up and are dying for lack of water? He pickes one up and throws it back. he picks up another, and throws that one into the ocean, too. As he's about to through a third starfish into the water, another man walks up asn asks "With thousands of starfish dying here on this beach, what possible difference can it make to throw a of them back into the sea?"

    The man threw the starfish into the waves, turned to the other man, and said "It made a difference to that one."

    If you never, ever do another moment of advocacy, fundraising, peer counseling or any of the other remarkable contributions you've made to our common fight, Kasey, you've made a difference to this starfish.

    Love.

    Amie


  4. I am so grateful I was with mom at the end of her life and saw her die. Otherwise, I don't think I would believe that she was really gone.

    That's where I am at with this. I miss her and feel lost.

    I returned her leased car yesterday and have felt queasy ever since. I'm one of those mothers who tries to give my son a substantive answer to every question he asks but his queries of "Where Grammy's car, mommy?" yesterday as we were driven away from the dealer were met with silence. After the 2nd or 3rd time I failed to respond, he said "Mommy, OK?" I replied "I miss Grammy." He said "I miss Grammy, too." I don't know if he really misses her or was just agreeing with me, but it was a moving and devastating thing to hear.

    Then he said "Big orange truck, mommy" and I remembered that, no matter what, life goes on. Sometimes it seems wrong that it does, but it does.

    Last week I faxed death certificates to all her creditors. The hardest part of that was going through the medical bills and collection notices, with their dates of service and copays. I have to say that, on the whole, all of the customer service representative and, in a couple cases, collection agencies I spoke with were really gracious.

    I'll be able to probate her will next week. We have a closing date on her apartment; it's the day before her birthday in August. And then I am flying to my mother in law in Ireland for two weeks to let her love and mother me and I can't wait.

    I come here and read all the time, I just don't post.

    Love and prayers to all of you, as always.

    bunny


  5. Thanks, ts. No, I am not personally obligated but her estate is -- for medical and consumer debt. I can clear her car lease (eventually) and her student loans, but the rest has to be dealt with creditor by creditor, unfortunately. And my personality is such that I need to clear things now, rather than have loose ends and wonder about a lawsuit years down the road. Also, I'm the executor of the estate so that makes me a fiduciary. I'm an officer of the court b/c of my profession. If I screw up as a fiduciary badly enough I can lose my license. Yadda yadda yadda. I am glad you didn't have to deal with all of this crap.

    Also, I have to probate her will in order to clear title to her coop. Blech. I will be so happy when all of this is done.


  6. My brother just got mom's death certificates in the mail TODAY. Now I can finally start clearing some things. I get collection calls on mom's accounts every day and no matter how many times I tell them she died, and the tell me that as soon as I send them the death certificate they will take the account out of collections and we can negotiate a settlement, they keep calling. And calling. And calling.

    And, if anyone is wondering, even death does not get you out of a car lease with Honda Financial Services Corp.


  7. When you feel like you can't take a breath- post here-and breathe.

    We are here for you.

    I can't take a breath. I miss her. And I am overwhelmed, emotionally and physically, by the job of liquidating her life.

    It hurts so much more than I thought it would. I can't take a breath today, much less focus on work.

    bunny


  8. I don't know how I imagined I'd feel when my mother died, but I keep being surprised.

    I cried all day and night the day she died, but from the day after until the 1 week mark, I just felt tired. Not quite numb, but not terribly upset, either. Just out of it, busy with 'arrangements' and tired. And sick. I woke up with a head cold the day after Suki died that developed into my first-ever sinus infection.

    I came back to work on Wed., 10 days after her death, and was happy enough to get back. I like my job and the people here have been an incredible source of support since November when we found out about her mets. And I was happy to go home and be with Levi in the evening, like I used to, rather than going to Calvary and getting home at 9-10, long after he was asleep.

    Then, over the weekend, I was so ridiculously happy. I spent the whole day Sat. doing fun things with Levi and Dave, I picked up cufflinks I had made for my brother out of one of Suki's rings which gave me great joy, I slept well, I ate healthier, and, above all, I was consumed with happiness that Suki did not have to suffer any more. Levi even talked about her a few times unprompted -- "Grammy. Blue fish. Eggs." All things he associates with her time in hospice. And, yes, I felt relief that we aren't going through it any more, either. I had time alone yesterday and I spent it doing laundry and thinking about her in a very not-sad way.

    And then today - BAM. I feel like someone is sitting on my chest, it hurts so much. I am posting here because I am afraid if I open my mouth I will melt down to the point that I will not be able to pull it together to finish the workday or get home on the train. Nothing happened. Nothing reminded me of her more today than other days. It's rainy, I'm hormonal, I suppose that could all have something to do with it. I just want to crawl into bed for a month.

    It's two weeks today. In fact, it's two weeks ago almost to the hour that I kissed her for the last time and left her for Calvary to do whatever they do. We spent 90 minutes packing up and dealing with all the stuff in her room after she stopped breathing. We were laughing that if she hadn't already died, she would have when she saw me cleaning up. She laid there as we did, all of us moving around her, making lots of noise with paper and bags and talking. It sounds crazy when I type it but at the time it seemed like the most natural thing in the world. When we were finished, my brother and I each spent a few moments with her, then we said good bye together. He cried; I didn't. I told him everything was OK, and believed it.

    So what happened to me today? Is this just how it's going to be? Blind sided by sadness and emptiness with no 'trigger' or anything? I'm not good without a map.

    Bunny

  9. Suki


    Suki died this afternoon around 2:30. I neglected to take note of the precise time, and didn't know everyone would ask. I was holding her right hand, my husband stood next to me. My brother held her left, and his partner held him. My father was with us, as well. In the end, mom just couldn't breathe any more. She struggled to pull in every ounce of air over the last few days of her life and by this morning her sats were down to an unbelievable 47. Still, it snuck up on me. Her color and breathing changed, and I thought it was a new plateau where she'd hang out for a while as she had the other plateaus over the last week or so. But she turned her head towards me, breathed 3-4 more times and was quiet. It was perfect and beautiful. And desperately, desperately sad.

    I will write more soon. I am waiting for all of our family to be notified before posting anything related to mom's death on Facebook, and ask that my LCSC/Facebook friends do the same.

    I could never overstate what this place contributed to my ability to show up for Suki since her first recurrance in 2005. Thank you is the understatement of the century. And I keep thinking about Fay A., who once told us that when she died she would not be losing the battle against cancer, but winning it by denying it a place to continue to grow. Suki won today. And I was privilaged to be on her team.

    Love, love, love,

    Amie


  10. I haven't updated because I always want to come with something positive and uplifting, and I wasn't sure what I've seen and experienced these last 3 weeks would qualify. But I see the truth here, so that's what I'll bring today as well.

    Suki settled in to the palliative care hospital very well. Calvary, while not fancy, is really a special place. They told us when we got here that they "admit the whole family." And they do. They have accomodated everything we've needed. The first 10 days Suki was there brought a flood of visitors from out of town and Calvary provided meeting rooms for us all to have meals together. There is a family-only relaxation-type room with a salt water aquarium that Levi talks about all the time, even when we're not there. "Blue fish! Big! Orange! Fish! Fish!" Like that. We've been provided with craft materials to workon Suki's chosen project -- taking hundreds of photos, sorting them, and getting them into scrapbooks and albums. Obviously, a bittersweet undertaking but one she loves.

    Mom keeps coming back to pictures of her father, who died when she was 16. She cried a lot yesterday over missing him. I have cometo believethat he will be her escort, as I have heard often happens when people die, and I am so glad. Suki has had so much loss in her life and I take heart from knowing she'll be with her whole family soon -- mother, father, 2 sisters -- who all predeceased her. Other favorites are pictures with my dad,whom she divorced more than 30 years ago, and other photos that indicate, to me anyway, a sort of inventory she's taking of her life. It is amazing and moving to watch. Her room is almost always filled with no less than 2-3 visitors, many from her years in AA as well as family.

    The good news: Suki's pain is well controlled by oral pain meds right now, she's in good spirits most of the day and she eats anything she wants, all day long. :lol:

    The bad/sad/real news: In addition to her incontinence, she has lost all strength in her legs. As of Monday, she can no longer get up to use the commode as she had been,and has found it very hard to adjust to that. She's been using what we've called "paper panties" for a while now,but she'struggling with the idea that she should really USE them now. She still gets in a chair each day and goes somewhere, either for a walk with us around the hospital (to see the fish!) or to a crafts class of some kind. But because Suki weighs almost 200 lbs,they have to move her with a hoist that she finds embarassing. We just leave the room and let the nurses do their thing. I have to say that 8 out of 10 nurses and aides at Calvary are incredible. Anyway, the worst part: her mental status declines daily. She is addled, confused, agitated and befuddled all day long now. She often forgets that she's dying, and when she remembers it's like hearing the bad news again. We go along with her wherever she is, because none of us see any reason not to, but it's so hard to listen to. "Yes, mom, of course you can come to Ireland with us this year." She takes great pleasure in planning new decor and paint for the apartment she'll never see again. She laughs heartily when she forgets a word, and loves to tell embarassing stories about me and Justin to whomever will listen.

    Despite everything I've said here,there is love and joy throughout this experience.

    So we're muddling through,as the song says. I pray things continue to move quickly and that Suki finds peace sooner rather than later. It will be excrutiating to lose her whether it's tomorrow or next month, so I would prefer tomorrow for her sake.

    I know this must be so hard for some of you with LC to read, and I am sorry for that. My mother has made the beautiful decision to allow her body to be used for research before cremation so some good -- any advance in how to treat, specifically, lepto meningeal mets and LC generally -- may come out of all of this.

    Thanks for all the LCSC love on Facebook. It's an easy way for me to keep in touch during the day while I am with Suki.

    Pray for us.

    xoxo

    amie


  11. God, heavenly father, Abba, Buddha, Jesus, Allah...in all of your names, I ask that you give me the strength and clarity to see my mother through this important and difficult time in her life. I pray that you help me be still and know that You Are.

    I pray that, in the spirit of St. Francis, my anxiety may be transformed into peace, my sadness into gratitude, my resentment into forgivebness and pardon, my confusion into resolve and my fear into faith. I publish this prayer so that the love and faith of the men and women on this Board may carry it to you, even as I falter and lose my voice.

    Guide the hands of Suki's new caregivers, that they may treat her with compassion and wisdom.

    Guide the travels of our family members coming to visit with Suki this week.

    Guide me and my brother though this transition in our lives.

    Guide Suki through this transition to her next place of being.

    Amen.


  12. Thanks everyone. I have so much to say but I get here and it leaves my mind. I guess that's the message, then -- be quiet and still and let people love me through this.

    Tomorrow my brother (who I have never been closer to than this moment in time) and I are going to tour Calvary at Suki's request (she's still a pisser! "I am not going anywhere I've never seen before!") and she should be approved and transferred tomorrow or Tuesday. Today was full of visitors for her which made her happy and tired. She's sad, mad, and doesn't like people helping her put her pants on (apparently) but otherwise, she's just the same old brave mama I've been blessed to know for 37 years.

    And she's funny, too. When reminding us of her wish to be cremated and "sprinkled over Paris" she noted she'd never made it to Italy, so maybe we could bring her ashes there, instead. In our weird family, that's humor.

    I am searching for the grace in the corners of this awful experience, and finding moments of joy there. Not the least of which is knowing I have, and have always had, this Board by my side.

    Love and gratitude,

    Amie


  13. UPDATE:

    Hey everyone. Thanks for the prayers and good wishes. So Suki is participating in a clinical trial where a drug called Dasatinib will be added to her regiment after she's been back on Tarceva for 4 weeks. Basically, the new drug, approved for treatment of other cancers, is being used to, hopefully, overcome the resistance most people (including my mother, based on blood and tissue test) build up after some time on Tarceva. The side effects of Tarceva will be harder on her than last time because her dose will be higher. The side effects of the Dasatinib, when added, are potentially more like those associated with traditional chemo, but still not (hopefully) as bad as we feared. Of course, there is a small chance of serious side-effects. So she starts Tarceva this week, gets a lung and brain scan on 3/10 and, assuming all is well, will start the 2nd drug that day. The trial is being done by her regular oncologist (Kris) and Dr. Miller at MSK. Here is a link to the trial, for those interested: http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=06-143

    Suki is doing OK. She is tired and still has left-side weakness in her leg and a lot of mental fuzziness. We had been attributing these symptoms to the after-effects of the WBR, but when we met Dr. Miller on Friday, his fellow seemed to think it was more likely disease. Which is disappointing, because the whole point of the WBR was to shrink the lesions in her spine and brain to alleviate her symptoms.

    Tough Girl Bunny had a very hard time after the appointment Friday, because I was so disturbed by something that happened. The doctors were discussing how difficult it is to treat leptominingial mets. Suki reacted to the news that there was cancer in cerebro-spinal fluid as if she were hearing it for the first time, even though we've been discussing it for months. It just seemed so cruel that she had to go through hearing bad news again and again like that. Also, I am feeling very overwhelmed by this power of attorney stuff. I can't stress enough how important catastrophic planning is. Suki hadn't done any, and I have no idea how we're going to keep her in her apartment longterm.

    So that's where we are. Keeping the faith, enjoying each others company and putting one foot in front of the other.

    Love to all.

    Amie

    --------------------------------------------------------------------------------------------

    Hi all. Suki met with her medical onc. today to get the results of a lung scan done Monday and hear his recommendations for treatment now that she's finished whole brain radiation and radiation to her spine (14 concurrent treatments). Unfortunately, there is evidence of disease in a lymph node in her lung. We thought that was the worst news we could get but Dr. Kris said he's not "impressed", that it doesn't change how he wants to treat her. So she'll go back on Tarceva and may qualify for a Tarceva-based trial, as well, which would combine another drug or some other version of Tarceva. Initially she'll take 100mg a day. If that's unsuccessful and she's not in another protocol, they will load Tarceva. If that doesn't work, they will look into other chemos.

    I have a lot more to say in general but that's the update and I have to get back to work.

    Love to all of you.

    Keep Suki in your prayers. She needs them.

    Amie


  14. Ellen,

    I could not agree with you more. For a nation that places such a high value on self-determination, I am baffled by our legal stance against self-euthanasia (for lack of a better term) for people who are terminally ill. Basically, we treat our pets more mercifully, in some ways, than we do each other. And I hope my interjection wasn't patronizing; I just worry.

    Bunny


  15. You're all so brave and strong. Carole and Ellen, I am admire your ethics, your courage and your resolve. The lawyer in me wants to remind you that we never have as much control over what we put out on the internet as we think we do, so be careful. The daughter of a cancer sufferer (and, yes, I know there are more positive terms for it but right now she's just suffering) in me hopes and prays my mother can make self-loving and sound decisions the way that both of you have, whatever her ultimate decisions may be.

    Love to you both and Katie, as usual, merely starting this thread shows how insightful you are into the needs of the people here.

    xo

    bunny


  16. Seems like it can't possibly have been 3 years, lovely. I think of him every time I see a David McCullough book. I think about how much he would have enjoyed the John Adams mini-series on HBO. I think about how tired he sounded the one time I spoke with him, but how positive he was even still. And I think about you -- almost every day.

    I meant to call on 1/1 but Suki ended up in the hospital that day and it was a chaos I know you know only too well. Know that even amid all of that, I was thinking of you and Brian.

    Hope you got a smile in the mail.

    Love you.

    Amie

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