Thursday, June 19, 2014

New Oncologist-eventually

TDM1 is a wonderful drug in terms of side-effects. I feel great!

Monday, I sat down for infusion #20. Before any nurse approached me, I heard voices several stations away. The voices were singing in unison a song that I have heard once before while there; a song that will never be sung to me.

I find this practice of singing about someone's last day of chemo with "Don't ya come back, no more, no more, no more, no more" somehow disrespectful to the many patients like myself that will never get this fun farewell. The tradition is of course nice for the patient free now to live their life without chemo, but is it really the best idea in a room full of people where some are terminally ill? It just seems . . . thoughtless. 

In 2010, the place where I received my chemo for my stage 1 diagnosis didn't sing. I received hugs from the nurses and was on my way. The place where I received radiation therapy did end my treatment by giving me a balloon. Not so bad when radiation is something that cannot go on indefinitely no matter what your prognosis. When I arrived home, I promptly let it go gently into the blue sky above hoping that I was through with treatments forever. 

But . . .  there I was on Monday receiving an infusion. 

My nurse has let me down again -- or perhaps it was my doctor-- really it was both of them. Six weeks ago I requested to have some of my treatments in Wilmington. My nurse was supposed to contact a new doctor for me, one that we had discussed, and have my records transferred. After not hearing from her for one week, I telephoned her. She replied that she had contacted a doctor, and she was surprised to hear they had not called me. Another week passed. I decided it was time for me to contact the potential new doctor. I called and to my utter disbelief I was told that since I was established with another doctor in their practice, Dr. A., I could not change doctors. Does that not scream a lack of taking care of a patient or what! I brought this to the attention of my doctor at my appointment 3 weeks ago. She assured me that I would hear from someone from her office about a new oncologist in the next two weeks. I waited. Nothing. One morning I awoke thinking about this. I became a bit perturbed by the whole thing and decided to send my oncologist an email. She responded almost immediately, apologizing in her response. That very day, the nurse called with two doctors for me to consider outside of the practice of my former oncologist. She too apologized.  I wish she would quit apologizing and do her job. She admitted she should have followed-up. This is the same person who decided she couldn't call me about my last scan because she "chickened-out" because the news was not good.

I did not see my oncologist as I thought would happen at my appointment on Monday. One of the PA's took her place. She was warm, friendly, and absolutely seemed to care about me -- a nice change. We discussed the next steps. I am to contact one of the two doctors recommended and if it is a seemingly good fit then I can request that the new doctor have my records sent to them. From that point I can receive all my treatments there. Whenever needed, I can return to Chapel Hill. My plan is to only go to Chapel Hill if I need to make a new decision about a change in treatment. Wow, this could have been so much simpler.

Then on Tuesday I received an unexpected call from my nurse. She wanted to call the doctor I had chosen and schedule an appointment for me. Sure seems to be a lack of communication between the people involved in my care since I understood that I was to call. Nevertheless I was grateful and hopefully she will call me by this week's end with a time and date to meet my new oncologist.

I also get frustrated with my having to remind my doctor that it is time for me to have a MUGA scan or some other important test I need. I am after all paying them to manage my care. Or, maybe I am only paying doctors for sharing their knowledge instead of them trying to not harm me during treatment. At this appointment I asked about my liver function. It seems my liver function had not been checked through a blood test the last time I received treatment. When blood was taken the morning of my treatment, no liver function blood work was requested either. The PA ordered this test and commented this was a necessary test for me because the drug I am on can affect the liver. Again I ask . . . why am I making sure my treatments don't kill me? Shouldn't that be what I am paying them to do. Frustrating . . . 

Number 20 is done. Now it is time to get ready for my sister's visit from Kentucky. I have been preparing for her and her family to come for a few weeks now. A little more cleaning and some grocery shopping to complete then all my work will be done. It will then be time for some reminiscing and relaxation.


  1. Yesterday I had my chemo and before I was always hearing cheering and clapping going on but never knew until yesterday what it was all about. Someone beside me had their last chemo treatment and all the nurses gathered around and gave the woman a diploma and said goodbye to her. I like you will never know what it is like to have this as my chemo I've been told will go on and on until they can no longer give me chemo. But after my last CAT scan the tumors have shrunk in the one lung but are still in the neck and chest area. All in all they've shrunk. I'd love to know that someday my treatment will end but I guess this time it's just not in the cards. When I had breast cancer they never sang or did anything after my last chemo treatments or for my second breast cancer a few short years later. Oh well.

    Sorry that you are feeling so frustrated and have to agree with you that they should be keeping better track of what you need when you need it and I understand your frustration.
    Take care till next time Lisa and I hope one day you and I meet. Who knows it may be in a better place that we do meet. Love Sue

  2. Sue, so glad to hear that your tumors have responded well to your treatment. I will be having a scan in a few weeks after my next treatment, and am I nervous, scared and sooo hopeful I will have the same result as you.
    As always,thank you for commenting on my post.It would be fun to meet you one day; perhaps it will happen.

  3. Hi Sweet Pea! Hope you are having a great family visit!!! I'm a little perturbed about the doctors' lack of follow-through after reading this one. Reminds me how doctors never checked Chelsea 's kidneys even with Urinary tract infection after infection...until kidney failure. Why? I know I'm not a doctor but this just seems disheartening. I love you Friend. I spent time at the beach this morning...just me and God talking about you! xoxoxo

  4. Sandie, Thank you as always for taking the time to write to me.
    After a weekend of entertaining, I am exhausted, but it was so worth it. We had a great visit.
    Sometimes it seems the best patients can hope for is that the doctor thinks of them after the door opens for them to leave. It is so sad all the stories I have read or heard about failures to diagnose. Thankfully, Chelsea is still here because of her own mother's kidney.
    Ahh, morning at the beach...I love the warm breeze and the sun on my face. My older kids don't care for it otherwise we would go more often. At least my girls will walk the Loop with me when it is not so hot.