State of Miah’s Mind- an adventure with cancer

  https://cbsloc.al/3ryi6es Apparently I am out of the chemo closet   If the bald head hasn’t given me away, cbs did   A nice story about how the nurses have been getting me care at home   Melissa, Emily and Sarah from Medically home have been monitoring me and my surveys for  months now   The biggest perk is able to hydrate at home   Nora ,Patrick and Kate all know how to set up the fluids and keep me hydrated    The power port in my left chest makes it so easy to have access . Every day I send my vitals and a survey about my well being   If I put a higher answer then normal then they have a nurse talk to me about what interventions make sense   They then report back to the oncology team at MGH     It’s so helpful for hydration, my heart rate and my kidney function to be monitored and hydrated at home

 Sharing pics from our mini photo shoot.  Thanks to Elizabeth Orrell for taking these fun edgy pics to commemorate 2020 and how much we have all pushed through to get  through.  

Finally over the hump of the heavy duty induction chemo.  Overall I must say I have weathered it quite well.  Main complaints are fatigue and everything tastes like it has too much baking soda in it leaving a taste in my mouth.  I’m tolerating water much better than before and my labs this cycle are far better.  I think it’s because we went without the cisplatin.  Unfortunately I will be getting a weekly dose of it with radiation but it’s less than half the dose of before so it should affect me less.  I just wish I could get my heart rate below 100.  Hopefully this week it will happen.  The medically at home people call me every time to make sure I’m feeling ok.  Of course I am.  The best thing is that all of my sinus symptoms are gone.  No congestion, pain or facial numbness.  Gone.  And the ringing in my ears is far less than it was before.  Everyone says I am quiet when I sleep now and I have to say it’s probably w...

 Note to self. And anyone who trusts healthcare. Nobody is perfect and mistakes can be made.   Apparently the cat scan I had on Wednesday did not include the head and neck. Only the chest.   This defeats the purpose of loading me up with radiation and contrast to find out if my cancer retreated from chemo.   So this question goes unanswered.  The mistake was easy to make. They put orders in for two separate CT scans but only scheduled one. It felt as though they were doing it as I was in and out of the machine head to waist but no.  They didn’t do the head and neck.    I was also fitted for the head stabilizer for proton beam.  It’s quite the contraption as you can not move at all.  The people were super nice and they did another CT for Dr Chan.  I am hoping she may be able to see what the other CT couldn’t but I haven’t heard back from her yet and the results aren’t in Epic.   On a positive note, I got the best hat ever in the...

 Went Monday to have my head Hennaed by Mona Bhatt. She did a nice job. I wish it was a little darker but do like the way it changes my bald head and almost looks like hair.  Patrick came with me and provided advice along the way.  We have a hidden turtle, butterfly and dragon fly.   Went today to have a CT and find out how I responded to the first two rounds of chemo    Alas they only did the CT of my chest and did not do the head and neck which defeated the purpose of the CT.  What a waste of radiation and contrast   It didn’t give me any helpful information.   After that CT I went to radiology oncology in the basement of the COX building   They made a mold of my upper body and shoulders to hold me still during radiation  looks like I start November 23rd