New Oncologist

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I had my fist appointment with my new oncologist today and it was kind of sad. I miss my oncologist at UCSF. She has been with me on this journey for 5 fucking years and it's hard to say goodbye. I hope that one day we can meet again cuz she was awesome. She got me where I am today. I know that it's just luck though. Not everyone responds to treatment so well like I have and I admit that I feel guilty about that. So many friends in my support groups have died and I'm still here. We really need a fucking cure.

 My appointment went smoothly for the most part. My new oncologist tried to prescribe decadron which is a steroid but I promptly nixed that. I DO NOT want to get on steroids unless absolutely necessary. I don't like the way steroids make me feel or the fact that they make me fat. It's sounds stupid, I know. But right now I feel relatively well and to me steroids are a last resort. I do not believe I need them at this time. I've been doing fine without them since November 2012. Unless I have progression and the new chemo is harsh, I will stay away from steroids.

 My new oncologist asked if I was still working and I said yes. I let her know that I was a nurse on the oncology unit just next door just because I didn't want her to be surprised to see me when she rounds on my unit. The nurse that took me on a tour of the infusion center kept saying "I'm so sorry you've been going through this" with a look of pity on her face. It's kind of weird because I've been going through this for so long, it doesn't dawn on me that it's a bad thing. Maybe it will be different when I have progression. For now, it's more of a teaching moment because most people don't understand the "terminal" part of being Stage IV, especially when you look healthy. 

 My first infusion at Kaiser is next Tuesday. I hope it goes well. It's going to be so weird for me and I already miss all my UCSF nurses that have been taking care of me for 5 years. I'm actually trying to stop myself from crying right now cuz UCSF has been a big part of my life and I'm afraid that by changing doctors and insurance that I will progress and things will all go to shit. 

 These past few weeks have been so stressful for me. Between changing oncologists and going through some personal troubles, I don't know what to do or what my future holds. There's a person (or more) out there that I want to shake and scream "WTF is wrong with you!"  It's been a bad month. When a person makes promises to me, I expect them to uphold them. I just want to be able to relax for once. And I want this transition to a new oncologist to go smoothly. If not, I guess I'll have to transfer to another town.

Comments

  1. UnknownJuly 13, 2017 at 9:43 PM

    I just went through this exact experience today! The new guy doesn't get it! He doesn't know me like my old person did. He doesn't know that I'm not just a passive patient that will do what you say because your a cancer doc. I am still living my life. Granted I look like shit on paper but I'm the healthiest stage IV person you'll ever see! I have questions. I'm not going to blindly follow you down this path. What are you going to do to help me live my life. Don't squeeze my shoulder with your sappy sympathy! I'm not six feet under yet. I don't plan to be for awhile. Now let's get down to how you are going to help me live, manage side effects so I can still provide for my family by going to work. I don't have time for this shit!

    ReplyDelete
  2. L.A.July 16, 2017 at 8:44 AM

    I just found your blog. Wow! Thanks for sharing your words, your thoughts, fears, etc. I will be following. For me putting thoughts to words is difficult but a need. So, your words help make a little sense of this fn crazy situation. I think you and I are in the same area of the bay area, too. Im one year in and doing "fine" too. Hugs. Thanks again for your blog. Im listening.

    ReplyDelete
    Replies
    1. UnknownApril 2, 2018 at 1:18 PM

      Sorry I've been MIA for so long. Thanks for your response. How are you doing?

      Delete
  3. Denise PaulsenJuly 22, 2017 at 8:56 PM

    Wonderful post. So honest and forthright. I really do hope your experience with your new doc is comparable to your last. Give the doc an opportunity to prove themselves to you. They will probably allow you to take the lead as you self-direct your own care. Every patient is different in their approach. I trust both of you will learn and grow through your dealings with each other. The best teachers are those that learn from their students. I'm sure your last oncologist valued the time they spent doctoring you. xo

    ReplyDelete

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