Booking tee times and surgery dates

20150317_080941Just when I thought everything was falling into place…  I feel great, I am getting back to work, and I have taken out the golf clubs.  Last week I was getting ready to book tee times and instead I am booking surgery dates.  This is not where I thought I would be in mid-March.  I feel far better physically than I thought I would at this point.  I am walking, going to yoga, working on meditation and mindfulness and my strength is returning.  My energy level is still low but it is improving daily.

I was also feeling so strong mentally and really felt that I was on my way to a full recovery, that cancer therapy and medical treatment was behind me and instead I am heading back into surgery.

In mid-February I had a CT scan of my chest, as part of my routine follow up.  It was earlier than the radiation oncologist in Kelowna wanted to do it, but in line with the follow up plan I received in Seattle.  The scan was to look at my lungs, as that is the logical place that chordoma metastasizes after surgery and radiation.  I was initially told that I wouldn’t get any results from the scan until my appointment with my radiation oncologist in April, which seemed ridiculous.  After pushing to get some results I managed to get a phone appointment in which I was told that my lungs were clear – no lesions or nodules – exactly what I wanted to hear.  However, I was also told that the lymph nodes in my chest are showing unusual enlargement.  The radiation oncologist didn’t know what to make of these results as they are not consistent with chordoma or its spread.  She shared the results with her colleagues and the provincial sarcoma group who agreed that it does not look like cancer but they had no idea what it might be.  In order to get more information my doctor referred me to a thoracic surgeon.

I met with the thoracic surgeon who indicated that he thinks the enlargement is likely nothing more than a reaction to what I have been through, however if it is something else we want to know what it is quickly.  He booked me for a mediastinoscopy (a biopsy of the nodes) as soon as he can get operating room time.  I had a pre-surgery consultation with the nurses and anaesthesiologist and will get into surgery soon.  While the surgery is short and “routine” it does require general anaesthetic and an overnight stay in the hospital.  Definitely not ideal but I am pleased at how quickly they are dealing with this and how seriously they are taking it.

I can’t let this derail me.  It is what it is.  I just need to try to focus on the present and on recovery. It is likely nothing and for a few days I was very good at not being stressed about it, but now that I have had the pre-surgery appointment it is weighing heavily on me.  I have the surgery blood band on which is a constant reminder that this is real.

No band for Paolo...

No band for Paolo…

I know that this is likely nothing to be concerned about.  The most likely cause of the enlargement is a reaction to the radiation and or surgery.  Of course it could be something much more serious.  I avoided doing any research on it for a week and then made the mistake of googling it.  It looks like the most likely causes are recovery from bubonic plague (doubtful), bite from a pit viper snake (unlikely), exposure to cutaneous anthrax (maybe – I don’t think I would recognize it) or cat scratch fever (very likely but I doubt Pippa is infected – her behaviour is typically aberrant).  I just want to get the results so that I know and can move on.

My disappointment with the findings was compounded by my frustration and confusion regarding getting the results I needed from the BC Cancer Agency.  I was feeling lost in the system, missing the clear and constant feedback I received while in care in Seattle and wanting someone else to take care of me.  I have since realized that I need to take charge of my own care.  I can’t wait for someone else to manage it, or moan and whine about it, I just need to take control, ask the right questions and find a path through that gets me the best care possible.  During and after my surgeries and stays at Kelowna General Hospital and Vancouver GH last summer, and while I was in Seattle, I was IN the system, so it was easy to manage my care.  Now I am on the outside and I need to be much more proactive.

At least this is moving quickly and I should have answers in a week or so.  I have to get back on track.  This weekend I allowed myself to get quite derailed mentally.  I left yoga yesterday before it started as I knew I would not be able to focus and I was completely unable to concentrate during the opera on Saturday, despite the outstanding performances by Joyce DiDonato, Juan Diego Florez and the other performers.

I am drawing on the good lessons I am learning in my MBSR course, am walking a lot and taking charge.  And I’m getting ready for golf season – I will golf this year!

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7 thoughts on “Booking tee times and surgery dates

  1. Keep the faith Paul! Consider tis a small detour on the path to good health. We will continue to pray to that end? Kerry & Yvette

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  2. Paul,

    Hang in there! I can’t blame you for being a bit worried. It seems to me that it’s pretty normal to be worried. T’is a diversion in your journey. Remember that you have tools from MBSR. It’s great that things are quickly coming together with the doctors & surgery. Your guardian angel is looking after you, Paul.

    As always, I’m sending you some positive, healing energy. Breathe…

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  3. Paul – I will pray for you. I know this lung procedure must be worrisome, but let’s hope for the best. – Robin, Sacral Chordoma Survivor

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  4. Paul,
    I totally understand your concerns and temporary derailment. It’s fine, don’t ask too much from yourself.
    I’ll keep sending the best vibes your way and wishing you renewed strength.
    Let the golf season come! You’ll be there.
    Cheers.
    Lucile

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