The beauty in clarity

April 21, 2014

405

Did I say the word hospice? Oops, forgot the explanation. I know it’s such a loaded word with so many negative connotations. This is where I happen to be, and it’s sad and scary.  See, I’m dying. We all are, of course. I seem, as some wonderful people have told me, to have a finer clarity on the matter which may be true only because I’m closer to it. How did I get to hospice? What does this mean for treatment? Etc.

In January I saw my oncologist, after a scan, and it appeared that nothing had changed (no new, no shrinkage of old). He referred me to the UA Cancer Center to determine if there were any clinical trials or other options. At this time, he gave me a prognosis of about a year. Went for other options, and thought about maybe doing a trial, but wasn’t sold on the idea. I had just come off of months of every week treatment, and felt just not good. The UA doc also gave me a year.

Needless to say, lots of thinking and deciding going on. In the meantime work was getting harder, and Social Security disability was giving me a hard time, so I opted to resign. Hard choice, as I loved the people I got to see everyday, but my work was seriously suffering. At this point I’ve decided to forgo any new treatments. It was difficult because I live to please and I wanted to do what would make family and friends happy, I didn’t want to seem like less of a “fighter” (which is such crap anyway!), didn’t want to “give up”. I had to be honest with myself and listen to my body; I couldn’t do it anymore. I was tired, sick of being hooked to bags, feeling like energy was being sucked out of my veins. I told my doc, and he suggested that it was time to look into hospice as a pre-emptive measure. I would have a team in place and they could get me meds whenever I needed them, and oxygen tanks, and support.

Yes, it is end-of-life care. I thought I had done work on becoming comfortable and at peace with my death, but nothing shakes you up more than seeing a sheet of paper, signed by a doctor, outlining time of death procedures. Or having to decide which friend to ask to sign my DNR. Or, even having those first tanks of oxygen wheeled into your house along with a giant machine (o2 concentrator) that sounds like a huffing and puffing robot.

It’s not even that, so much, that brings tears to my eyes at the most random moments. I woke up one morning and looked at my sweet pup, Mala, and the lump in my throat formed and thoughts poured into my mind like water in a pitcher. I won’t get to see her as an old pup, these eyes I’m looking into will be old and wise. Then I start thinking about all the eyes I have seen and how both pairs won’t get to share in that delight. Then I think of my husband’s eyes.

In a strange way though, as morbid as it sounds and as many tears as I cry, I feel so lucky. Again, it’s the clarity of it. The insight of it. The sometimes random stupidity of it. I mean, really, I have to clean my o2 tubes when my nose starts to run? Believe me, it makes me think about every tear I cry.

Even though hospice is scary and sad, it is so helpful for my quality of life, which is much more important than quantity. It gives me the opportunity to visit with dear friends I love, it helps me sleep, it takes some burden off of my husband, it helps me face questions head on. Looking and looking at more loving eyes than I could ever imagine, with their wisdom and their grace.

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12 Responses to “The beauty in clarity”

  1. Dede Cummings said

    Alina, This is so beautiful! You write so well, and I am going to read your entire blog! Please message me your mailing address so I can send you a book I published called Lasting Words. Keep writing, and I respect and admire you and your decision. Seek purity in mind and body, and you will be rewarded by the excellent care of Hospice—and you will live a lot longer, too! Sending you love and light and I will add you to my daily meditation. Let’s get Jades book out there in the world—a book that features you! xo

  2. cousin Leslie said

    You write SO beautifully cousin~ I love you! I hope you know this. When you say “Then I start thinking about all the eyes I have seen and how both pairs won’t get to share in that delight. Then I think of my husband’s eyes.”– the tears started flowing out of no where. And where she says “Even though hospice is scary and sad, it is so helpful for my quality of life, which is much more important than quantity. It gives me the opportunity to visit with dear friends I love, it helps me sleep, it takes some burden off of my husband, it helps me face questions head on. Looking and looking at more loving eyes than I could ever imagine, with their wisdom and their grace.” There is such wisdom in your writing that we all can learn from.

    You are one special lady! I hope to be able to visit with you sometime soon. Enjoy your trip with your husband and make memories to last eternity. “SMOOCHES”

  3. Hi Alina, I don’t know you – just got nudged in your direction after a post by Canidice Garrett, Facebook, you know 🙂
    You’re clearly a beautiful being – it shines through your words.
    Strangely, or perhaps you’ll not think it strange – reading this made me happy. I’m trying to put my finger on the why of it… I think because, as I read your words I also felt your clarity, and your presence, and your joy.
    You’re so damn right – it’s not how Much you live, it’s how much you Live.
    There’s no death really. I’m sure you’ll be right there with your pup and your husband and all the people you love and who love you. It’s just a veil that we move beyond. And you seem to be doing it with such grace and dignity – a lesson to the rest of us.
    Thank you.
    Ben

    • alinamo said

      Oh Ben, thank you SO much for your very sweet words. Yes, Facebook and Candice bringing us all together! 🙂
      I completely get the happy feeling! There is something to be happy about, and thankful for, that I’m getting this insight. I agree with you re: death too. It gives me some amount of comfort when I look into those eyes.
      I’m glad I was able to reach you in some way, as I never know exactly how my writing will be taken. Thank you for sharing with me.
      Much love, Alina

    • Leslie said

      I agree Ben… it is “just a veil that we move beyond.” The veil between this life and the next is so thin. And loved ones who have gone before us are there welcoming us with open arms. What a Joyful and Peaceful place it must be! 🙂

  4. Lucia Maya said

    I’m so grateful that I found your beautiful blog Alina. This post touches me deeply. Making the conscious decision to use hospice and being so present for your own process is inspiring. You have such wisdom and grace, and I’m glad you’re sharing that with us here!

  5. Lucia Maya said

    Reblogged this on Luminous Blue and commented:
    Such a beautiful, clear, insightful and wise post by my friend Alina about consciously choosing hospice care at this stage of her journey with cancer. Thank you Alina.

  6. tric said

    Alina found this post via Lucia Maya. Life is all about living. Sometimes people get so caught up in trying to get better and live longer that they miss the moment due to all the hospital visits.
    I so admire your decision. It is one I think I myself would consider.
    Tomorrow at 10am I will be attending the funeral of my friends son. He died in a climbing accident and is in his twenties. No warning, no chance of chemo, radiotherapy or trials and more importantly no chance to say goodbye.
    You have been given the chance to live in the now and tell all you love how you feel.
    My own dad died in his early fifties of motor neurone disease. What a wonderful, if tragic, few years we had together as a family. I believe we were actually very lucky in some ways.
    I wish you peace on your journey and I hope you live a good life
    Well done you. xxx

  7. cousin Leslie said

    Love this Yoda quote…”Luminous beings are we, not this crude matter.”

  8. TIA said

    Breathtaking writing! While I cant imagine your decision was an easy one, what youve decided for yourself is admirable. You have chosen to live your life, and every moment of it. Thank you for sharing this. You show such bravery and are an inspiration.

  9. Mommy & Daddy said

    Alina passed away May 5, 2014.

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