Sixth months

I recently spent two weeks in the hospital with small bowel obstruction and kidney failure amongst other problems. Things are progressing and the prognosis isn’t great. My oncologist is giving me approximately six months. The bowel obstructions aren’t clearing up — I’ve had to have a venting g-tube placed in my stomach to empty stomach contents from building up. This means I can’t eat a normal diet anymore, only a full-fluid diet of soups and ice creams and juices and supplements. I have a nurse who comes in every day to give me IV hydration and change dressings as needed. A personal support worker comes by a couple times a week to help with bathing and such. I’m followed at home by a palliative doctor so I don’t have to go into the hospital for appointments.

I’ve spent much of the last couple of weeks telling people about this change in situation and preparing for things like entering into hospice care when needed. I have a form in with Kensington Gardens hospice and whenever I feel like it is too hard to stay at home, I’ll activate that application to get a bed there.

I don’t know what to say about this. I’ve been processing the news for awhile, and frankly I’ve felt so sick for so long now that it isn’t really a shock.

I still appreciate offers of visits and such, but be patient if I don’t respond right away. I’ve been a bit overwhelmed by the number of people wanting to see me and I am frankly exhausted and in quite a bit of pain still. Visits are nice, but I can often only tolerate 20 minutes or so at a time.

Thanks in advance for all the well wishes and please don’t be offended if I don’t respond.

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About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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21 Responses to Sixth months

  1. rvanhalm says:

    Wishing you well, Alicia. It sounds tough. I’m happy to hear from you and glad you’ve got people there for you. Those of us far away wish you all the best on this next part of your journey. xx Rochelle

  2. Hi Alicia, I think of you daily. This news is not what anyone, (least of all you, I am sure) wants to hear. If you have any crazy ideas of a wild kind of ice cream or smoothie or a drive to someplace lovely, please let me know. I wish I could take away your pain and discomfort. If there is anything we can do to lessen your load, just say the word. I cannot imagine how this feels for you.

  3. marillawex says:

    Sending you lots of love. Selfishly I want to see you, but I can only imagine how overwhelmed you must feel right now. My heart hurts for you and for the loss I already feel. You’ve probably heard this a hundred times already, but if there’s anything you want, need or fancy – just let me know.

  4. Alicia, your tenacity and continued brilliance during this astonishingly awful time continues to amaze me. I’m so sorry to hear this incredibly sad news. I do not want to invade your beloved circle or suck any energy from you but please know that I’m here if you need anything at all. If you want a big pot of soup or a delivery of something sweet and soft, a book or some flowers, I’ll be right there. xox

  5. fucking ugh. ditto to the above comments. i am not in the city so i can’t add to the overwhelming offers of visits, though i selfishly wish i could. my selfish fantasist wishes i could visit with a newly acquired secret formula that could turn all this shit around. i wish there was more magic in the world. i wish so many things for you. in the interim i’m sending all the good and positive my server will allow.

  6. Jennifer says:

    Alicia I too have been thinking of you every day, and holding you in light and love in my heart. Knowing this was coming doesn’t make it any easier.

  7. Molly says:

    Love you, Alicia. You, heroically brave woman xox

  8. Anne Katz says:

    Alicia –
    I have no words (strange for a writer) and do not expect a response. Please know that you have touched me and you are an inspiration to me and many others. Wishing you peace. Anne

  9. Derek McCormack says:

    I am grateful for the post, and grateful to know you.
    Love, Derek

  10. fotogfoodie says:

    Alicia, I am so sorry to hear this. 😔
    I want you to know you’ve been a great help to me. Through your blog I’ve been able to understand what my mom went to through in her battle with cancer. I wish she was as brave as you, and opened up more and asked for help more. Your candor has helps me gain a little bit more closure. Thank you.
    I’m thinking of you and sending you hugs.

  11. Thank you for this update. I think about you all the time, and how I want what’s happening to not be the case. On your twitter profile it says that you’re not a survivor and I think I get that – it doesn’t mean that you give up; it means that if you called yourself a survivor you’d believe yourself to be special and all those “non-survivors” to be doing something that wouldn’t ensure their survival. But life is both beautiful and random. And, also, cruel. I think the bravest thing about you and your situation is that you have been living honestly. I think it takes a huge courage to live honestly. I’ve approximated it a few times but I’ve never had a pain and a trial like you, hence approximated. I don’t know the kind of grace you have or the distance that you must assume in order to not go completely crazy from knowing. We’re not supposed to know. We’re supposed to think that we have more control and power over things we have no power over. I hate when people say they believe in fate and things happening for a reason. This is a thing for no reason. I’m absolutely humbled by the fact that you took time to update us here and in such graceful, kind fashion. You must know how powerless those who love you feel too and it’s very selfless of you to let us in right now. Like everyone else who loves you, I’m offering my help – whatever you need (I make really good soups!) – and I understand if you don’t take me up on it. I’ll be saying hi regardless. (Why did that sound like a threat?) (It’s not a threat! Hi!)

  12. Ellie says:

    Alicia, I am so sorry to hear this prognosis. I found a newspaper clipping about you and your blog pinned to a bulletin board at Wellspring at Sunnybrook a few years ago and have been following your blog ever since. Your courageous and tenacious fight with cancer has been an inspiration to me in my own cancer journey. I was amazed how you continued with your work, travelled and attended conferences and participated in trials and refused to give up. Wow! And now as you prepare to enter palliative care, my thoughts and prayers are with you for peace as your journey with cancer slowly comes to an end. You have fought a good fight! Thanks for sharing your journey!

  13. kristineff says:

    Sending you so much love.

  14. Geoff says:

    Alicia, thank you for your honesty and courage to be so open with so many. You are inspiration. “Be like a blade of grass, rooted yet willing to lean.” – Chinese Proverb
    I’ll keep you in my heart on the days ahead.

  15. Brenda says:

    Alicia, sorry. This disease is a BITCH. I hope you are able to obtain whatever kindness and care you need.

  16. Steph says:

    I’m so sorry and sad to read this and angry at cancer, and at the world for being unfair. I wish I could offer you anything that could help. I’m glad to see you have so many awesome people who care about you and are supporting you. I know we never met in-person but I think about you often and always appreciate your honesty and lack of sugar-coating, as I’m sure many people do. It’s rare.
    Sending you lots of hugs and love.

  17. Aimee says:

    Alicia,
    Your strength (even on days when I’m sure you feel weak); humor (on days of non-stop crying); beauty (with/without hair and other conditions of cancer); reflection (in the face of terrible news); honesty (when denial would be easier); intellect and amazing writing talent, have been of great comfort to me in my own battle with cancer. Even in the midst of your struggles, you have given so much to others. I wish I could make this stop. I aspire to live as hopeful and meaningful as you do. My thoughts and prayers are with you, your family, your friends.

  18. Maureen Keeler says:

    Alicia, I am so sorry for your diagnosis, you are so young and talented, open and honest, sharing this painful experience bravely for all the people who know you, and a lot that don’t. I, like many others keep you in my thoughts and prayers, Know that you have made a difference in many lives, your strength and courage are awe inspiring, you words will linger in our hearts and minds long after you join your loved ones on the other side, who are watching over you now. God Bless you Alicia.

  19. Michael says:

    Alicia,
    You are an intelligent, beautiful, courageous, wildly funny, marvelous, awesome woman. I have been following your blog from afar, and am thankful for your honest and humble generosity of spirit. I think of you often. I pray for you now and then. I am sorry you have to go through this shitty cancer. It is not fair. It sucks on every level. I can only say that when my friend Steven who died much too young last March told me in all honesty that he glimpsed Love as the key to eternal life, I believed him. With my whole being I pray for you Alicia to be held by this Love now and in the days to come. You belong to Him.

  20. Carey says:

    I’ve never met you, but I feel robbed at the prospect of your absence on this earth. I’m very sorry for all the awful stuff you’ve been through. I hope your brain is kind to you in coming months. I love your writing, I just bought that Adam Penn Gilders book you wrote about once. Giving you my useless best. Carey x

  21. Regina says:

    Alicia, my name is Regina. I´m from Mexico city and I´ve been following you for about two years. It all started because around that time my husband got diagnosed with stage four colon cancer and one day while brousing the New York Times, I found Suleika Jaouad´s blog (which I would have never read if my life had not been touched by cancer). The point is that reading the commentaries on one one of her posts, I found one of yours and it really got to me. I was impressed by your intelligence and strength and also your sense of humour.
    I just want you to know that I¨m sending you the best vibes and wishing you all the peace and love in the world. With all my heart,
    Regina

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