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.