Tuesday, October 31, 2017

The First Symptom

Day 35 of hospice care. I now have symptoms.

It seems a bit incongruous to have a picture like this at the top of a post as serious as this one. But I won't let this disease keep me from having fun. But before I get to my visit with my team, I have to tell you about my appointment this morning with the main member of my new team, my hospice nurse, Carolyn.

She arrived at our house at 10:30 this morning. For the first time, I had news for her. I told her about the trouble I've had sleeping. She didn't think that was a symptom of my cancer. I told her that I think it might be the last batch of cannabis oil I got from my caregiver. I'll talk to my caregiver and try a different batch before I ask for sleeping pills. That oil has never kept me awake before. Just the opposite.

I'm actually glad for the mostly sleepless night I had last night. It gave me a chance to write The Last Encore. I'm glad I was able to report on that important event in my journey. But now we're back to hard news. Very hard.

After I told Carolyn about the insomnia, I told her about nausea and weight loss I've been experiencing for a few days. She considers this a symptom of my cancer. If true, this is very disappointing. Remember, I wasn't expecting symptoms until closer to Christmas. If they started before Halloween, that's really bad news.

She told me about a drug for nausea in my Comfort Kit, the Mysterious Box in my refrigerator. Ondansetron. Isn't that a Transformer? After she left, I was feeling pretty nauseous, and took one of the pills. I hated opening that first bottle of pills from that box. It seemed like a concession. It makes it more real, somehow. I'm now using something from that box I never wanted to open again. And only five weeks after starting hospice care.

The bottle said nothing about taking it with food, so I took the pill on an empty stomach. It made my nausea worse. I had to lie down until it passed. That wasn't encouraging. For a while I wondered if I'd be able to make it to my doctor's office for my consultation. But I managed to eat something, which settled my stomach a bit, and I went. But before I did, I put on my red suit.

Today is Halloween. When I set this appointment, my friend LaShay told me they were dressing in 1980's garb for the holiday. So I decided to join in the fun. I still have all of my skinny New Wave ties from that decade. I thought I'd wear one of those ties. But then I remembered that Sharon had made me a bright red suit in the 80's, modeled after the one Huey Lewis wears in a music video. As you can see, she did an amazing job.

When she made that suit in the mid 80's, I had a 28 inch waist. The last time I tried these pants on, I couldn't fit into them. I probably weighed in the upper 130's at the time. Now I'm losing weight because of the nausea, so those pants fit again! I knew that's what I should wear to the office. I wasn't just wearing 80's clothes, I was going as someone!

When I walked in, they all loved my outfit, and we took the picture at the top. It was really fun. I almost blinded my doctor when he walked into the room, though. I offered him my sunglasses. It was great to see him. I told him about my nausea, and he wasn't ready to say for sure it's a symptom, but he agreed that's the most likely explanation. He recommended I try taking Ondansetron sublingually, so it doesn't hit my stomach so hard. I'll try that next time.

But I also told him that I had discovered that what they say about medical marijuana is true. It really does help with nausea and appetite. Being a medical marijuana patient, I do have some, though I prefer the oil. But the suppositories never helped with appetite. Apparently, it's best to smoke or vape it for that. So yesterday morning, after I woke up feeling very nauseous, I decided to try it. Thirty minutes later, I was hungry. So that's a solution I can use when I don't have anywhere to go. I'll also try CBD, which is non-impairing. Better that than a pill, in my opinion.

But one way or another, we have to get a handle on this. Gaunt Cancer Guy is knocking on the door. Sooner or later, I'll have to let him in.

My doctor and I talked for a while, and I finally pressed him for a new prognosis. I had told the office I wanted one based on the new PSA number, 13.2. He said my cancer is growing at a steep rate. He knows that my cancer moves very fast, and keeps growing faster. But he wouldn't give me a number. All he would say is "months."

At the same time, he acknowledged that the appearance of my first symptom this early is disappointing. It's not likely to get any better from here. It will only get worse. Everything has happened sooner than predicted with this disease. And the pace keeps increasing.

While my doctor wouldn't give me a due date, here's what I know. They don't put you in hospice care unless you have six months or less to live. I've been in hospice care for 35 days. You do the math. And that's the maximum. If past is prologue, it's likely to be less. Maybe much less.

But I didn't let my discomfort or disappointment keep me from having fun today, nor will I in the future. And I still believe that, despite the odds, if God wants me here, I will be here. I still have things to do, goals to meet, and people to love. I'll keep doing that for as long as I can.

I've never written two blog posts on the same day before. But I've never had two such important events happen so close together, either. The last encore and the first symptom are connected. It's all one story. A love story. A story about a dying man who plays in a rock band with teenagers and wears red suits to the doctor's office. A story that's funny and sad at the same time. A story of meaning and purpose. A story with a beginning and an end. And all good things must come to an end. #waroncancer #bearingwitness


  1. You keep on it, Mark. Whatever you do, don't let it take away your sense of humour or your enjoyment of what you have left. In due course, I'll be travelling a similar road to you, and I'm hoping to get to the end with spirit intact.
    Hear from you again soon, I hope.

  2. As far as the suit you can get some more mileage out of it as Santa this Christmas :-)
    A tragically very hip Santa :-)
    I am going to send you a song i wrote with my pastor rick long many years ago that is based on the Psalm you wrote on a couple of posts ago.
    It has always been one of my favorites.
    Peace to you my brother!

  3. I heard Hospice is for those with six months or less to live BUT there have been patients who have exceeded that time limit. Keep writing and fighting in all the days you have left.

    1. That's true, but I have yet to get more time than expected. All my cancer does is speed up.

  4. I loved your story I will tell my husband about it thanks so much hugs

  5. The photo says it all....everything about living fully. You rocked Halloween, Mark. Continued joy to you. After all, you were my only rock band experience back there in 1976...and pretty patient with an aspiring church organist. Love & peace, Jane H.

    1. You were the best keyboard player I ever had, Mary Jane. All the other times it was me!

  6. Thank you Mark for sharing your journey with us. This story made me smile and tear up ll at the same time. I am praying for your peace and comfort.

  7. Mark, I am so thankful for your story and that you are willing to share it all with us. You have made me laugh and brought me to tears, but most of all you have been an inspiration and model for how to deal with this disease called cancer. You are such a great example of living life with faith and a positive attitude, as well as dealing with end-of-life issues and reality. Yours is a life well-lived and a credit to your Maker. Our hearts and prayers are with you and your wife.

  8. Mark, as I follow your posts, I find great inspiration, and thank you. I am OK so far with this damn cancer, but not in the clear yet. Based on all of the postings I see, I realize that even though I may be OK today, this cancer can come back even after several years of being "clear". I am ready for it if it does, and, like, you, will continue to share my experiences with this group because I think it helps us all. Once again, thanks for your inspiration, and may God Bless you and yours.