keeping it together

keeping-it-together.jpg
My friend Jesse and his wife Rebbecca came in from St. Louis on Saturday afternoon.
Unfortunately, it had been days since I was able to go to the bathroom. I spent most of my time taking natural laxatives and sitting on the toilet with a sour stomach. The end result, not much except the knowledge that opiates that give me pain relief are really the culprit here. I could not get a doctor’s note for my colonic Saturday. Something had to give. But nothing did, I felt sick. I stopped taking my opiate meds. Things finally made their way through me. My decision to not take drugs met with a lot of resistance from friends and family. I “yelled” at Alec to clean his room and all of the sudden I’m a bad guy. Kelly decided I was going through withdrawal. Not a single factor would be considered. Truth is sometimes death is very isolating no matter how wonderful everyone is.You know that death is a place you go alone. And it’s easy to get jealous of the healthy. It’s easy to say, why me? Even when I am totally at peace, I get tired of making this ok for everyone else. I want somebody to make it ok for me.

So as uncharacteristic as it may seem, I have done a lot of crying. So much that my eyes are swollen. I have not entertained my guests at all. They have hung out with my kids. We played Apples to Apples. They have walked the dogs, they went to breakfast with Kelly while I had a nervous breakdown. And thankfully I felt well enough to go to the premiere of Hancock the new Will Smith movie.The character is immortal. I was dreaming about what it would be like to be immortal. To never have to deal with any of this cancer drama. I want my big happy healthy spirit to go into a healthy cancer free body. I feel like there is so much life left in me.

My friends are leaving in the morning. Our visit was short and sweet. I was happy to see Jesse one more time. I also saw Rosanna Friday night. That was lovely too. I appreciate short visits. Even drop bys. But long visits from people who do nothing are just the worst. I need help with medicine. And the kids and the puppy. And if you don’t know how things are done than ask somebody or don’t come by all day. 20 minutes twice a day is the new visiting schedule. It allows me to be present and available for my kids. I do not feel bad about this set up. And if you are just coming by to say hi, you have 20 minutes. I think that is enough. Tomorrow I am getting a colonic at 2 pm. I got the doctor’s ok note. Then at 4 the hospice agency is sending their bereavement counselor to talk to the kids. None of them are excited by this but I am certain it is good for them. So tomorrow is a busy day.

The rest of the week includes visits from nurses,counselors,and social workers. My husband is off. There are folks coming to say hello and bring meals. I can handle some visits. Call me or Naomi to see whats up. Love Andrea

27 Responses to “keeping it together”

  1. You really are a wonderful woman. Don’t worry about how other people feel, because they know you are doing the best you can and everyone loves you regardless of whether you can spend time with them or not.

    There are so many people who love you and are sending you all their good vibes right now. Sending an infinite number positive thoughts to you and your loved ones… Thank you for being such an inspiration. You rock xoxo

  2. leah says:

    no one should feel bad about your schedule, you know what is right for you!
    i love you and i’m sorry to hear about the “problem” again i’m excited to hear you are getting the colonic tho!
    i will bring you some tea
    i love you!
    ~leah

  3. Victoria says:

    Oh thank God. I am thrilled that you are pissed off with death, dying and disease and bloody do-gooders who are trying to make their peace with you. Don’t they realise you’ve got enough to be getting on with without trying to accommodate their feeling and their goodbyes???
    I hope this brings a wry smile but my friend died last October and whilst she’s in the process, a woman from her church insisted on being there even though everyone was very distressed about it. Apparently God told her to be there! I hope someone in your house is able to tell such a person to fuck right off. Much love to you Andrea, hope the colonic does its job, Victoria x

  4. maryellen Nerz-Stormes says:

    I think disease and death are extremely isolating. Non one wants to go there, not even many people who are close. Maybe the miracle is that our kids just will still act like themselves around you even though you are going through this terrible thing. I would always marvel that my son would give me a hard time when I was very ill at times. Then I would think- that is normal, he is acting like a teenager.

    It is a wonderful and terrilble thing.

    One time, I was vomiting all night and I really started to think how awful it woudl be to die from this disease. I sat just watching Pope Paull II on TV with no sound. You are not alone. In the isolation, know that God is with you. God never leaves you. I used to say that in the totaly isolation, that was when it was easiest to find God.

    In regard to your stomach – did the nurses suggest taking reglin. Reglin speeds up your entire system and maybe with the natural laxatives, you could get things back under control.

  5. Gift of Green says:

    Houseguests and fish go bad after three days, as the old saying goes! 🙂 Hope you find a schedule that is good for you and allows for all the time you need. Thinking of you today.

  6. Michelle Wienke says:

    I have been worried not to see you blogging-now I know why,,,,I wish for you a wonderful colonic today, and lots of time with the kids and Kelly afterwards.

    Not much else I can say, and I cant make you feel better- you deserve to have a pity party once in a while-you are entitled to it!

    With love-
    Michelle

  7. Tina, French Creek, WV says:

    God Bless you, girl. I know you are so sick of dying. I hope you get some peace . . . in your house & in your spirit.

  8. Jill says:

    Andrea,

    Praying for peace for you today, and understanding. My heart is right there with you.

    GOD BLESS.

    Love,
    Jill

  9. Alaina says:

    Dear Andrea,

    The truth is, none of us knows what it feels like to die. Some of us may think we know because we have gone through it with others but still the feeling of it, we dont know. And you are sharing all of it wth us. You are more honest than any person I know. Dont worry about hurting anyones feelings. Its not about any of us, its about you, your husband, and children etc. Everyone else, Im sure just feels so blessed that you have loved them enough to let them in.

    I love you and will be praying today that you get some relief. I love you Andrea, alaina

  10. Renee Khan says:

    Andrea:

    No one can ever make it okay Andrea. Because no matter what anyone tells us it will never be okay. It is a fact and it is our reality but it is not okay.

    How much I wish I could comfort you with my own words. It is impossible. I like the sound of this quote though, for me it doesn’t make it okay it just makes it a little easier to digest.

    “The last voyage, the longest, the best. Look homeward Angel. Death bent to touch his chosen son with mercy, love, and pity, and put the seal of honor on him when he died.” ~~ Thomas Wolfe ~~

    Love Renee

  11. Donna Arnold says:

    Hi Andrea:
    I so totally agree with Victoria. This is about YOU and no one else. This is your journey….folks can be so insensitive, and nosy, at times like this. You have no reason to feel badly about making limitations….this is a private time for you and for your family!!!! That privacy needs to be respected…..
    The medicine someone was telling you about is REGLAN….ask your hospice nurse about it….
    Yes, the opiates are very constipating. Ask the nurses for SURFAK, a stool softener you can take twice a day to help with the constipation. You can buy the product over the counter at most drug stores as well, you do not need a prescription for it. Its 240mg gelcaps. Generic name is: Docusate Calcium……there is a milder version Docudate Sodium….get the Doc. Calcium…….
    The oncologists should have every medicine in their “regime” for cancer patients…its very difficult, late at night, when no one is aorund to be trying to find theses meds….Cathy’s doctor has a “regimne” and you get the prescriptions and/or names of OTC meds, and you have them when you need them…
    Sending you peace on this journey, know we are with you in heart & spirit…always…I love you, my friend!!!! Donna in SC

  12. Ruthie says:

    Andrea,
    Whew! You are human….you had me believing that you were superhuman 😉 Boy, if I don’t go every day, I get as grumpy as a bear, or worse! Who wants to spend the entire day on the pot with a sour stomach? You should not be denied the ability to empty out. You should get ANYTHING you need at this time. I say daily enemas or colonics are in order!

    I am glad that you had a good short visit with friends. I also think it was good for you to tell people the truth about what to do and what not to do, how long to visit, etc.…I know that people just want to “be there” to help; people feel helpless in these situations and it is the truth that some people just don’t have a clue. So, get it all out, don’t apologize, you don’t have the luxury of pussy-footing around the truth that must be told. How much time we all waste in this life, mulling things over in our minds, trying to figure out just the right way to say things so that we don’t step on someone’s toes or, heaven forbid, offend someone else! Some things just need to be said. Bravo!

    Your family and loved ones want to be there with you, now and especially at the time you pass, and even though you will be escorted to that moment on both sides in Heaven and on Earth, it is you, and only you, as you so poignantly pointed out, who will be making that step across the divide between life and death. As you daydreamed as you were watching Hancock, you will be immortal, Andrea. You will spend eternity in your real home, Heaven. I hope you get “quiet” time to prepare your soul for that. Even though the house is busy, there must be time just for you to wrestle/entertain with this in your mind.

    I have not been with anyone their last few weeks of life with cancer, but I imagine there is a paradigm shift that must take place in the mind for one to pass peacefully. You spoke of being at peace with death/dying although others are not. You also said that you need someone to make it OK for you. May I ask you if there is anything anyone can do to make it ok for you? You must know that you have an army of family, loved ones, friends in the flesh, and bloggy friends who would do just what it takes to make it okay for you….if we only knew. Would it be that you need to know that it is okay with everyone else for you to just let go, that you are not giving up, but you are just letting yourself drift with your body to the place it wants to take you? Perhaps this, too, is a path that only you can walk. Perhaps you must come to the place where it is okay with you, yet at this time you still have times when you wish you could transport your healthy spirit into a healthy body. You have truly already begun the steps to getting there in your mind. You have said No to opiates, you have said No to heroic measures, you have said No to toxic and unhelpful people. You will get there, Andrea. I will be praying that you truly come to the place where it is okay with you and that when you are ready, you leap over that divide with a smile on your face and peace, total peace in your heart.

    Ruthie from California

  13. Donna Arnold says:

    Ruthie, well spoken!!! Donna in SC

  14. Bill & Karen says:

    Dear Andrea, You are surely entitled to a good cry. I hope today’s colonic restores your peace. Bereavement counseling is an excellent thing for the kids. I hope it will open avenues for them to talk about their feelings. Bill & I will try to give them a chance to talk while we are there. We want to be of use, being with the kids and with Kelly, walking dogs, getting food, running errands, whatever is needed. You know we are good at staying in the background and disappearing too. We want to be with you, but give you all the space you need.

    See you soon,
    Karen

  15. Joi says:

    Andrea, I just want you to know that we love you and you are one of the most beautiful people I have ever known. Love, Joi

  16. Heather says:

    There’s the feisty girl I knew was still in there.

    No Apologies. Whoever needs one is a really selfish person anyway and you don’t have time or energy for that. (Go scratch peeps)

    Tears allowed! This really sucks ya know!

    You have transported yourself. You’ve done that through your children. Your will, strength, love, fight and everything else that makes up Andrea will forever be a part of those beautiful children. When their heart beats so does yours. When they laugh so do you. When they cry so do you. The love you have giving to them and to Kelly will be the love they carry on for the rest of their lives.

    To having a painless day – Cheers! Heather

  17. Wendy says:

    Yes to what everyone else has said. It is exhausting trying to be available to everyone who wants to see you, even when you’re not sick. Your energy and focus needs to be on you and dealing with a failing body and giving your quality time left to your family. We all love you good, bad, ugly, sick and dying. I am glad you have stated your needs and limitations. I hope things are moving better today and I will be praying for the kids this afternoon. When my parents divorced my mom took us kids to a family counselor. I was not amused. In my opinion, the counsleor didn’t know me or my family and I certainly wasn’t going to talk to her. The kids have to be overwhelmed by all of this and to some extent resisitent to the reality of it. I will pray that the bereavement counselor would have just the right words to meet the kids needs right now as well as their ability to be open to it. Love you, Wendy

  18. ByJane says:

    Wow, is that a relief that you’re getting mad and showing it. What you’re doing (at least for me), Andrea, is allowing me to walk with you down the path so that I can know what it’s going to be like for me. I so love that you are BEING AND FEELING EXACTLY WHAT YOU ARE and that you’re saying it. Thank you, thank you, thank you. I KNOW that when my time comes, I will be thinking of you and getting comfort and wisdom and cheer from your complete honesty.

  19. Elizabeth from West Chester says:

    You dear, sweet girl. You have MADE yourself immortal through this most precious project. And here’s a job for one of your friends or family members: compile your blog into a book and make billions of dollars that will support your family once you are gone. I know I’d buy it! I will take your message of humor and hope with me into the OR tomorrow as I have my second mastectomy.
    Love,
    Elizabeth

  20. Another Elizabeth from West Chester says:

    Hi Andrea – I have been praying for you and your family ever since finding your blog. I wish I had gotten the opportunity to know you personally – you sound like a very special person, a great mom, and a cool chick! Thank you for sharing yourself and your experience with all of us.

  21. Maura says:

    My Dear Andrea…You have allowed us to see your strengths and now your weakness. You are HUMAN just as we all are. You need this time for you & your family to be together talking, laughing, crying & just being who you are.
    I unfortunately was there for a very loved close friend that was like the sister I never had. From the time she was diagnosed to the days before she left us. With the help of Hospice, we were all able to help ease her pain and fears. In the days before she left us, she was very comfortable and pain free yet not communicative. The day before, she rallied like nothing I have ever seen other than in a movie. She told everyone in her family including myself and my family how much she loved us. We reassured her of our love and that it was ok for her to let herself float over to to Heaven and to raise HELL. It was not 8 hours later, that our beloved friend passed with the most relieved look on her face.

    You are allowed to say and feel whatever you want to whomever you chose. GOD SPEED & know that you will forever remain stronger than life in so many people’s memories.

    Maura

  22. Andrea- My Hero,
    Up until this moment I only wanted to be in the background.To tell your story,to be a voice that propels people to your blog to send assistance to your family,to drop of food,to pray!It is so difficult to seperate our own feelings of grief,of loss of inadaquecy…Having dealt with this enemy my whole life,losing my mom when I was 15,dealing with my own masectomies and chemo,(blah, blah,blah).
    YOU have taught each and everyone one of us who have been blessed with knowing you,for a lifetime or 5 minutes that life though never fair is always beautiful.As I told you the last time I saw you at HUP…I will never forget you or your million dollar smile.I pray that as your body grows weak your spirit gains strength,just look how much you have influenced and changed the world from your bed…You are amazing,You are my hero!!!The world is so fortunate for the gifts of your children,apples never fall far from the tree-your legacy and wisdom live in them.You have given them the greatest lesson in life…may they live it with light and love in thier hearts .If you are not happy with the grief counselor Hospice sent,contact Safe Harbor thru Abington Memorial Hospital or Kid Support at Gilda’s Club both are amazing!!!I can get Naomi the info if you wish.

    In Love and Gratitude,
    Jeanette

  23. Ed says:

    Andrea,
    I’m so glsd that you don’t feel you need to be any other way than what you are. That isn’t the best sentence structure I’m sure. Fuck the rest of us and how your dying might make us feel. It’s your death, no one elses.

    Let me know what you need from me. Love, Ed

  24. imstell says:

    Dear Andrea,
    There is no right way or wrong way for you to be doing this. It is strictly your road to travel. Your journey and no one elses. And it must be isolating. I can not even attempt to imagine how much so. Perhaps a bit freightening. Definitely draining to try to be positive and “on” all the time. How difficult it must be to know there will be no chance to change the last memories for yor loved one’s left behind. Were I in your position I know I would feel incredible pressure to make my last impression “perfect”.

    Ruthie is right on the money, I think. Your work here is nearly complete. Transitioning is bound to cause disjointedness, I would think. Ultimately, however, it is only about you, the traveller.

    Oh, how I wish I could read your first blog post from the other side of Heaven’s Gates.

  25. Dina says:

    I finished work today. Finally. At least 60 days without 4th graders. Let me (us) know what you need. Happy to cook, visit or not, whatever. I have some physical therapy info for helping with constipation, though I am not sure it can cancel out/undo the effects of the opiates. It just sucks when you need one drug to undo the damages of another. I would just like to see you as comfortable as possible. Hang in there, my friend.
    Much love, Dina

  26. Bill Beck says:

    Congratulations on your recent honor of being named a Best Of Blog winner. The winner buttons have now arrived and all you have to do to receive yours is send an email to my address below with the subject line of “Winner’s Button”. I will start sending these out this week.
    Thank you,
    Bill Beck
    Best Of Blog Awards
    Email:bloggerbeck@aol.com

  27. Jill Aldrich says:

    Andrea,

    I cannot fathom the aloneness you must be feeling right now. No one can really understand what you’re thinking and feeling, and that has to be completely isolating.

    Your story is so grossly unfair.

    I think people read your story and try to imagine how they would handle it. I know I do. My heart goes out to you as you struggle to process the most powerful feelings of your life, while dealing with other people’s expectations of how sick and dying people should think and behave.

    Of course you want people to make it ok for you. And I hope there are a few people in your life who are doing everything in their power to make it ok for you.

    In the meantime, the prayer I’m sending up for you is that God will make it ok for you. Get pissed off at him and let him know how unfair this whole shitty thing is. And let him hold you as you beat on him and tell him that this life here can be ridiculous and meaningless and unbearably painful.

    I know you have moments when you’re at peace, Andrea. I hope and pray those moments soon will stretch out endlessly for you. In the meantime, I just have to say, I deeply admire the love and the spunk and the fight I see in you.

    Abundant peace and love,

    Jill