In 2002 we ran away from Illinois where we were born and raised, and started a new life in SW Florida. This blog is about me (an eccentric old artist), ROM (my Real Old Man), Isabella (our neurotic Standard Poodle) and Emmy (our crazy snake killing Jack Russell Terrier). Oh- and the neighborhood old people. Life is good in Florida!

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Sunday, January 26, 2020

Can We Talk?

Friday morning as I got ready for the appointment with my oncologist, I felt a sense of dread building in the pit of my stomach. We had only met once last week, and I felt I had failed to explain to her what my expectations were and what I needed from her. So I spent sometime organizing my thoughts and clarifying in my own mind what I wanted to share with her. I felt it was important we both be upfront and have an open discussion. 

Last week when we arrived, the office was packed with patients coming and going. Lots of hustle and bustle. Today it as we walked in I couldn't help but notice it was quiet and only a handful of people were waiting. As soon as we sat down we were called down the hall for lab work. The tech was a handsome young man and excited about the new EMT training program he would soon be joining. It was nice listening to his plans and couldn't help but get caught up in his enthusiasm. 

We were then ushered into Dr. Vanderwall's office. I swear there is a swoosh of energy when she enters a room. She's delightful. Immediately she asked if I had done the brain MRI she had ordered. Let's go back a minute to last week... she had mentioned I needed a brain MRI to see if the cancer had taken up residence. I didn't have enough time to process that before we left last week. But as I thought about it, in my opinion it didn't matter. The cancer I have has metastasized to my lymph system, my chest wall, my spine, my thyroid and right lung. I was late stage 4 and only expected to live months at the most. So every day last week when the office called to set an appointment for the MRI, I let it go to voice mail. I decided I want to discuss it face to face with Dr. Vanderwall.

When she asked if I had it done, I told her no, that we needed to talk. She called back to her staff and told them to quit looking for the results because it hadn't been done. Then she came in and sat down. I asked her why the MRI was important and she said so that they knew what kind chemo treatment to give me. I made and maintained eye contact with her and hoped she would truly hear me... then I asked her why we are even talking about treatment. There is no curing this or even realistic to expect a remission. Treatments would only prolong the time I was miserable in pain and then dealing with the side effects of treatment on top of it. I emphasized I did not want that. And then I told her what I did want- I want to be as comfortable as possible, I need quiet nights watching TV with my husband, I want to feel well enough to enjoy the time when friends visit, I want to laugh about old times and the absurdities of the present situation. I want to sleep in my own home, surrounded by my dogs and Mike, my favorite things around me, some yummy food, music, watch the geckos on my windows, hear my neighbor scold her dog for leaving the yard. I don't want to go bald, puke my guts out, and die a ravaged skeleton of myself. Evidently I got the fat cancer- have only lost a couple pounds this past month. Which I don't think is fair- I think I should get to wear some of my cute skinny clothes before I die. But I digress... After I had my say, she sat back and drew her head up and just looked at me. Then I softly added- I just needed make sure you heard and understood what I was trying to say.

She reached across us and clasped my hands with hers and said she heard me. She said she was just shocked because very rarely is a patient so blunt and clear. And she agreed with me. With treatment I was looking at frequent hospital stays, tests and procedures and probably wouldn't add any quality time.  My heart was singing thank you thank you thank you! I realize oncologists devote their career to beating cancer and rightly so. It is their calling. I get it. Doctors go into debt and spend years to learn how to cure people, not to help them have comfortable deaths. But maybe there should be a specialty for good death doctors. 

Dr. Vanderwall and I talked for sometime, tears were shed by both of us. I shared with her that I have had a very full life and didn't feel cheated out of anything. Someone dying at 40 with a full life ahead of them is a tragedy. Death at 70 is not. It's a normal life span. Let's keep this in perspective. 

I told her how blessed I felt to have been put in her path and that she understood what I needed. What I didn't expect was for her to tell me she was grateful that I was her patient, that she needed a patient like me from time to time. Lots of hugs, more tears and then good bye. 

She left the room, I think as deeply moved as Mike and I were. It was a profound experience and I swear I had to have been beaming with gratitude when I left. Just as we were to step out of the building, Dr. Vanderwell and her nurse ran out for one last hug and said thank you before the door shut one last time. 

My case was now closed at the Cancer Specialists Center of Bradenton. I am now a patient of Tidewell Hospice and I have total faith they will keep me comfortable, help Mike through the difficult times ahead and help me find my way to a good death. The hospice manager came to our home today to make plans for my care. We have opted for home care for as long as we can cope with my needs here. If it becomes too much for Mike, we have other options we can look at later. But for now, I'm home, comfortable, and at peace. I even made a pot roast today. The hospice woman was amazed I was still cooking. Hey, if you want pot roast, you have to cook it!

So here is how I feel tonight... 

I did not sculpt this- it was created by a couple of my favorite artists Shelley and Michael Buonaiuto Mike bought this for me on our annivesary years ago and it is still one of my favorites. I always intended to buy "Water" for Mike but never got around to it.  

Okay, we're caught up. Next post I will share what goes on when you sign up for hospice. 

15 comments:

  1. I admire you so much and remember I'm terrible at having the right thing to say my mom fought that useless battle and I understand and appreciate your life your terms and your strength. If I can do anything for you please ask.

    ReplyDelete
    Replies
    1. Thank you! I've been so uplifted by you all supporting and understanding why we chose this course.

      Delete
    2. WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Clara David I’m a citizen of USA, My younger sister was sicking of
      breast cancer and her name is Sandra David I and my family have taking her
      to all kind of hospital in USA still yet no good result. I decided to go to
      the internet and search for cancer cure so that was how I find a lady
      called peter Lizzy she was testifies to the world about the goodness of a
      herbal man who has the roots and herbs to cure all kind of disease and the
      herbal man email was there. So I decided to contact the herbal man @herbalist_sakura for my younger sister help to cure her breast cancer. I contacted him and told him
      my problem he told me that I should not worry that my sister cancer will be
      cure, he told me that there is a medicine that he is going to give me that
      I will cook it and give it to my sister to drink for one week, so I ask how
      can I receive the cure that I am in USA, he told me
      That I will pay for the delivery service. The courier service can
      transport it to me so he told me the amount I will pay, so my dad paid for
      the delivery fee. two days later I receive the cure from the courier
      service so I used it as the herbal man instructed me to, before the week
      complete my sister cancer was healed and it was like a dream to me not
      knowing that it was physical I and my family were very happy about the
      miracle of Doctor so my dad wanted to pay him 5 million us dollars the
      herbal man did not accept the offer from my dad, but I don't know why he
      didn't accept the offer, he only say that I should tell the world about him
      and his miracle he perform so am now here to tell the world about him if
      you or your relative is having any kind of disease that you can't get from
      the hospital please contact dr.sakuraspellalter@gmail.com or whats app him
      +2348110114739 / via his website https://drsakuraspellalter.weebly.com/ you can follow him up on Instagram @herbalist_sakura for the cure, he will help you out with the
      problem. And if you need more information about the doctor you can mail me
      davidclara223@gmail.com 

      Delete
  2. Replies
    1. Your daily support has meant so much, Debra. Thank you.

      Delete
  3. Both my parents had help with Hospice, one in S.C. & one in N.C. It was priceless...and yet free. I am so happy you're in the hands of these true saints of mercy. I hate hospitals & treatments & appointments & I really & truly hate puking, so I understand your choice fully. Love the sculpture, too. I can see you & Mike in "Wind" & "Water".

    ReplyDelete
    Replies
    1. I have to pinch myself to believe hospice is real. It's like being swept down a dark scary drain and suddenly find yourself on an oasis of sunlight and green trees.

      Delete
  4. I promise you will not regret Hospice. They were here for my husband and I and as a result hubby left this world in true peace with me by his side as he drew his last breath. It's been 5 months and Hospice is still holding me up. Ask them for anything, if your Hospice offers massage and music therapy go for it. I admire your courage as you are choosing death with dignity. Having a goal for how you chose to transition from this life to the next will make choices easier because all choices support the goal rather than fighting it. I had heard it said before but didn't believe it. When death is done right, it can be a beautiful, magical, mystical moment. It means you go in peace and Mike has that precious moment to always hold onto. I am holding you both close in prayer.

    ReplyDelete
    Replies
    1. Oh, Babs, how wonderful of you to spare me the time and energy to share this with me. If I had any doubts, you've soothed them. Thank you!

      Delete
  5. I truly admire your strength. Hospice will also be able to support Mike.

    ReplyDelete
  6. I’m sitting in the orthodontists office with tears. Tears of sadness for you and Mike of course, but also tears of understanding. I was hesitant to say too much because she had what we jokingly refer to as “negative patient outcome” but my mother had lung cancer that spread as well. She found out when a tumor appeared on a neck scan that they accidentally went too low on. Originally she didn’t want chemo, but then changed her mind. Looking back I understand why she made each choice. My mother taught me that quality of life is THE most important thing. I am so happy you have found a doctor who truly HEARD you and supported you. That’s an amazing thing and sadly not everyone is so lucky. I think you are handling this all with incredible grace and determination. Please let us know if we can support Mike any any way, even if it’s having a meal delivered. I’m so sorry you are facing this but know that I admire the heck out of you and am so impressed by your attitude and conviction. Sending lots of love your way.

    ReplyDelete
    Replies
    1. Having just been through this with your mother, I'm sure you gained a new perspective on dying. Funny we think we know how we will react to a life altering event, but I find it often turns out much different than I thought.
      I'm so grateful that each doctor I saw, built the nex rung on the ladder to get me to the people I needed. It's been magical.

      Delete
  7. This made me cry, and though Gerry says I can cry at a hockey game, that hasn't been the case so much lately. (I think being on an anti-depressant makes us a little bit too level.)

    ReplyDelete
  8. WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Clara David I’m a citizen of USA, My younger sister was sicking of
    breast cancer and her name is Sandra David I and my family have taking her
    to all kind of hospital in USA still yet no good result. I decided to go to
    the internet and search for cancer cure so that was how I find a lady
    called peter Lizzy she was testifies to the world about the goodness of a
    herbal man who has the roots and herbs to cure all kind of disease and the
    herbal man email was there. So I decided to contact the herbal man @herbalist_sakura for my younger sister help to cure her breast cancer. I contacted him and told him
    my problem he told me that I should not worry that my sister cancer will be
    cure, he told me that there is a medicine that he is going to give me that
    I will cook it and give it to my sister to drink for one week, so I ask how
    can I receive the cure that I am in USA, he told me
    That I will pay for the delivery service. The courier service can
    transport it to me so he told me the amount I will pay, so my dad paid for
    the delivery fee. two days later I receive the cure from the courier
    service so I used it as the herbal man instructed me to, before the week
    complete my sister cancer was healed and it was like a dream to me not
    knowing that it was physical I and my family were very happy about the
    miracle of Doctor so my dad wanted to pay him 5 million us dollars the
    herbal man did not accept the offer from my dad, but I don't know why he
    didn't accept the offer, he only say that I should tell the world about him
    and his miracle he perform so am now here to tell the world about him if
    you or your relative is having any kind of disease that you can't get from
    the hospital please contact dr.sakuraspellalter@gmail.com or whats app him
    +2348110114739 / via his website https://drsakuraspellalter.weebly.com/ you can follow him up on Instagram @herbalist_sakura for the cure, he will help you out with the
    problem. And if you need more information about the doctor you can mail me
    davidclara223@gmail.com 

    ReplyDelete

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