Loss of mobility while traveling

Yas and I flew to New Orleans last week (4/20-24) to see my step daughter Shaye and her girlfriend Kyndra. We stayed at their house, which they have been renovating and we went to the New Orleans Jazz Fest on Thursday and flew back to Boston on Friday.  It was a wonderful time. 

Alas, traveling as a cancer patient has its risks. In the week before we left for New Orleans I started to lose motor control of my left foot and the muscles in my left leg began to weaken. My neuro-oncologist switched me from Prednisone to Dexamethasone and said that if the symptoms became worse I should go to the Emergency room and get a CAT scan of the lesion in my right frontal cortex to make sure there was no active bleeding.  My mobility worsened a bit in New Orleans so I went to the Emergency Department at the local hospital and had a CAT scan.  The ED Attending doctor talked to my neuro-oncologist and the lesion had actually shrunk a little, so they let me go home after just a few hours at the hospital,  Everyone was very nice and it was generally a good experience.

My mobility still has not improved and I'll call my neuro-oncologist tomorrow (Monday 4/27) to see about next steps (no pun intended). The loss of mobility is something that makes me sad and ocassionally brings tears to my eyes. It limits my independence and requires me to rely on others to get the simplest things done. Also, I get out of breath just walking a few feet, so it is very tiring. Luckily, I have no pain and I'm fairly certain this is caused by inflammation around the lesion in my right frontal lobe, so we will be able to treat it; but it is frustrating. In the meantime, I'm getting good at using my walker!

It is hard to make plans, especially travel plans, when one is fighting cancer. I'm lucky that I have a supportive family that understands these challenges. I'm hoping that my cancer lesions will continue to shrink, without additional medication, and that I'll go into remission in the next year or so which should make it easier to make travel plans, but for now I will be thankful for what I have and I'll continue to enjoy the company of my family and friends!

Comments

  1. JaneMay 12, 2026 at 12:44 PM

    Hi Tim,
    I’m sorry that I missed these last 2 posts until now. I’m glad you went to NOLA and the Jazz fest, although I wish you hadn’t also needed to go to the ED. I hope it has been warm enough for you to sit out on your deck to see that spring is finally here. Talk soon! Love Jane and Jon

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