Thursday, September 14, 2017

The Hardest Part


I saw my oncologist today. The news was as expected. Zytiga didn't help, and he has nothing more to offer me that I'm willing to accept. My cancer is growing at an increasing rate, and no medication can slow it down now. Since Zytiga didn't work, that means that symptoms should begin for me in the next few months. His original estimate was that I'd start to experience symptoms within six months after treatment stops working. Treatment stopped working in June, which means we're talking Christmas at the latest.

Before you say he could be wrong, remember that he could be wrong either way. So far, he's only been wrong on the optimistic side.

While we expected this news, it's different when you hear your doctor say it out loud. But that wasn't the hardest part of my appointment today. Not even close.

I asked my oncologist when I should start with Hospice. He thinks I should talk to them right away. Not that I'll need them this month or next, but it will help them get to know us and our needs. If I need treatment again - radiation for bone pain, for instance - I can exit Hospice and go back to their office for that. He will refer me to Denver Hospice, and set up a consultation next week. They'll interview my wife and me, and based on that interview, we'll decide whether to go ahead with Hospice now or wait.

But talking about entering hospice care was not the hardest part. It was related to it, though.

My wife went with me today. We knew this was a key consultation and we both needed to be there for it. We were first called in by an assistant who has taken my blood many times. A very sweet lady named Leara. We have become friendly since I started being treated there in January of 2016. She took my blood pressure and got me logged into the system. We talked about our plans for the weekend. When we talked, I had no idea I'd be saying goodbye to her when we left. Now we're getting to the hard part.

After she left the office, the doctor came in. The startling thing he said to me, the thing I wasn't prepared for, was that once I go into hospice care, I won't go to his office for care anymore, unless I opt out of hospice for some reason. The Lupron and Xgeva shots I got today were the last ones I'll get. It started to dawn on me that I was losing my team.

Then my nurse Melanie came in. There were hugs all around, and jokes about how this was her last chance to see my cute little butt. That's how she describes it, anyway. She gave me my last Lupron shot and Xgeva shot. I was actually sad that I won't be getting shots from her anymore. "No more pokies" is the way she put it. I said, "But I like your pokies!" She's the best poker in the business, bar none.

Getting my shots wasn't anywhere near the hardest part. It was the easiest part. But I had started to become very sad. Not because I'm on my way out, but because I knew I had to say goodbye to these people I love so much. I had to say goodbye to my team. I'm still close to tears about that now.

I didn't have to say goodbye to Melanie, thank God. We will continue to be friends, and she will continue to check on me right till the end. I'll have a nurse provided by Hospice, but that person won't be my Melanie. I am so blessed to have her in my life.

Anyone who has read this blog for a while knows how much I love my team. I've said it over and over. I love going there, and I love those people. And it tears me up to think I won't be going back there for blood draws and tests, for consultations and shots. They're not my team anymore. I've lost my team.

While I am very thankful that Melanie will still be involved with us even in hospice care, I knew I had to say my goodbyes to the medical and office staff who have been so kind to me. I was glad that Leara was there when we approached the front desk. I told her that, when we had talked earlier, I didn't know I'd be saying goodbye to her today. She came around in front and we embraced. I asked to see Nikki, another who has taken my blood for tests multiple times. I've mentioned her before in this blog. As with my doctor and nurse, I thanked both Nikki and Leara for their kindness, and for taking such good care of me.

I spoke with Anne and LaShay, who work behind the front desk. They have both been very kind and helpful to me as well. LaShay is relatively new, and it took her a while to realize just how famous I am in that office. But she was soon calling me by name when I came in, and helped me tremendously to get an appointment at University Hospital to discuss clinical trials. I will miss both of these ladies very much.

Then there was Cindy. She works in the office, and helped me straighten out an issue when I was there last Friday for my PSA test. While I was at the front desk and she was trying to help me last Friday, an elderly gentleman walked up and greeted Cindy. He had been there for his annual test. Apparently that test had come out well for years, and he was going back home still cancer-free. He told Cindy that the next time she was in his area, she should stop in and see him and his wife. She agreed and said she would call him.

As he walked away, I told her how much I loved that exchange. It was typical of the treatment I've received there, and of the culture they have. She told me a story of her interview for the position she now holds. She was told they wanted to hire her, but it depended on her answer to one question. Cindy became a little nervous, not knowing what kind of question it would be. Then she was asked, "How do you feel about treating patients like they're your family members?" She knew she was in the right place.

As Cindy and I embraced today and I said my goodbyes, that story came alive to me. That's exactly how they treat their patients. Melanie may be the most personal example for me, but all of them there, from the oncologists to all of the staff, treat patients like family. They become friends with their patients. They do this knowing that many of the relationships and attachments they form will cost them. They form connections only to lose them. That's why these people are angels. If you live in the Denver area and have cancer, I can't recommend Cypress Hematology and Oncology in Porter Hospital enough. They will treat you like family.

I was told over and over that I can come back and visit anytime I want to. And I will. But it won't be the same. Each time they see me, I'll be worse. I won't be able to spend much time because they'll be so busy with patients they're treating. And soon I won't be able to go in at all.

Sharon and I left, and I was in tears all the way home. Cancer isn't the hardest part. Treatment isn't the hardest part. Dying isn't the hardest part. Saying goodbye is, by far. Saying goodbye to the ones who have cared for me and kept me alive these last twenty months. I'm sure Hospice will send new angels that I will also love, but I'll still miss my team terribly. Saying goodbye to them today was the hardest part of all. #waroncancer #bearingwitness

9 comments:

  1. So from the heart, Mark. Thanks for sharing your truth. Having had many friends go through hospice care, I can say from experience that it seems to be a great program, and truly about quality of life. You have been told, I guess, that folks who enter hospice early, live longer than those who wait until they are really sick. I continue to hold you in my thoughts, Mark. Peace.

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  2. Thank you always for sharing. I understand this pain of loss. I have been spending my weekends with my dearest friend who is in hospice. There is palpable love there. All tough. Much love to you always.

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  3. Blessings blessings man of God! #Believeland, Ohio

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  4. I know saying goodbye is hard, but think how much worse would it be if you didn't have these people in your life to say goodbye to. What you have added to each others lives is imeasurable.

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  5. Mark,

    I want to say thank you for sharing. Your blog was passed around the office of the Prostate Cancer Foundation today. We are inspired by your honesty and attitude. Your story reminds us why we work so hard to find a cure for this disease, especially for families like yours with a history of the disease. God bless. Tom Andrus Chief Digital Officer Prostate Cancer Foundation

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  6. I have reversed my breast cancer with cannabis oil and a plant-based diet. I refused the toxic standard of care treatments. They told me I would be dead a year ago. You have probably heard this before. Why not give it a try? You dont have anything to lose. The fb group Cannabis Oil Success Stories has hundreds of success stories.💖💖💖

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    1. You may be new to my story. I've been using cannabis oil in its purest and most potent form (first RSO, then cannabinoid distillate) for almost two years. It hasn't affected my cancer at all. I can't do a plant based diet because I'd lose too much weight. Please don't assume you know what I have and haven't done unless you've been following along.

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  7. Mark,
    Voice from the past here. You'll remember me from ONU, Orpheus and Concert Singers most likely. My brother, Greg (Bumpus) and I sang with you under Dr. Dunbar's leadership in the 70's. Occasionally I've wondered over the years what happened to some of my Olivet comrades and often thought of you, and, of course, Sharon, because I don't think I hardly ever saw you on campus when you weren't walking together, arms wrapped around each other. (Could you walk along without falling?) :D So I was surprised when I came across your blog, I think around the time I heard of Dr. Dunbar's passing. I've lost a number of friends to cancer, and other illnesses or accidents as well. Sometimes I want to say, "Life sucks, and then you die," because the reality is, none of us gets to pick how or when. When someone has had time to think about it, and process, as you have here in your blog, well, you've left a lot of important messages and inspiration. I'm sure that doesn't make it any easier for you and Sharon.

    But I want to share with you one of my best memories from all my life. A bunch of us were travelling in an Olivet college van. It was Concert Singers, and I believe we were somewhere in the frozen tundra that is near Fargo, North Dakota. (I think I remember passing through there in the middle of the night, only vehicle on the road going to CNC maybe?) Anyway, this skinny kid (that's you) actually spent time breaking down the parts of "Black Water" and getting us to put them together. I remember Margo, and Tim, maybe Sheila? Not sure who else was with us. But I can never hear Doobie Brothers without thinking of you, Mark. And I still remember my funky dixieland part, by the way. I didn't think anyone else but you would have done that - you lived and breathed and moved music, all the time. Even when you walked it was kind of a dance - I could tell it was always in your head, the tunes, the beat, circling, cycling, you had no choice but to make music!

    So, I'm not in your inner circle of this journey you've had to take. But the ministry you've had, the wealth of your songs, and parodies, and the puppet legacy have been far-reaching over these decades. (I know, how can time go so quickly?) Reading your blog, you've had a journey rich in friends, people whose lives you've touched and enriched. I loved reading about your Morsefest experience. I still pray for your healing. We know God heals in many different ways and areas of our lives, we can't understand the ways or reasons. I will continue to pray for you and Sharon and hope that you find joy every day in the little moments you share together. A lot of people never find the love you two found early and the way you've honored each other, letting each other be who you need to be, is a gift. Thank you for sharing your journey here - you never know who you've touched or how. It's your legacy, Mark, and a great one.

    Sing on,
    Sue Summerford
    Adrian, Michigan

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    1. Hi Sue! Thank you so much! That is very sweet. I remember that trip well, and I definitely remember figuring out the parts for Black Water! I actually found out many years later, when I recorded a parody of it, that I had missed one of the parts! But in my defense, I was learning it from a car radio. It's because of that musical ear God gave me that I was able to have the music career I've had.

      Thanks for sharing this beautiful memory, and for all your kind words.

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