Update, Dec 1 2013

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I started my treatments (simultaneous chemotherapy and radiation) in mid-October; I get chemo every Monday (it takes about 3 hours) and radiation five mornings a week (each session is about ten minutes long). The standard protocol for this kind of cancer is seven weeks’ therapy, which brings us to early/mid December.

 

 

Weeks One and Two were easy. I was able to work almost a full schedule, and felt almost no side effects at all. (I did notice that Thursdays were bad days for tiredness, malaise, etc.).

 

 

Week Three began to get interesting. One evening I discovered that my beard hairs were falling out by the dozens, so I shaved the whole thing off.  My sense of taste went wonky – almost everything tasted awful, like cigarette ashes and cardboard. Acidic and spicy foods were literally painful. Ice cream was okay for a while, and marshmallows, but I was eating less and less because the flavors and sensations were so unpleasant.

 

 

Week Four: now I was feeling it. I got very dehydrated (my own fault for not getting enough water). My old friend the kidney stone decided he wanted some attention too, so now I was taking pain medication both for my throat and my kidney. Swallowing was now becoming very painful too; I was reduced to eating soup and crackers, and I knew I was losing weight. Still going to work most days, but seldom for more than a few hours; I was generally very tired most of the time.

 

 

Weeks Five and Six: finally decided to stay home full-time and rest. Using my feeding tube now – frankly, much easier and efficient than I thought it would be. My daily menu is six cans of Ensure Plus, two each for breakfast, lunch, and dinner, plus lots of water.

 

 

On Friday of Week Five, I got very listless and warm; Partner took me to Miriam Hospital, where they determined that my white blood cell count had crashed over a period of a few days, and I had an opportunistic infection (probably thrush). I spent seven days there, absorbing intravenous antibiotics and waiting for my blood count to get back to normal. (The number in question, my Absolute Neutrophil Count, was around 300 when they checked me in; 1500+ is normal, and anything under 500 is dangerous.)

 

 

Anyway, so seven days in the hospital. I was perfectly comfortable, and all of the nurses and doctors were wonderful.  Partner spent time with me mornings and evenings. My voice is terrible – sometimes I can’t speak at all – which made communication with the nurses and nurses’ aides and doctors very interesting sometimes. (I ended up using a “conversation book” – if I wanted to say something more profound than “yes” or “no,” I wrote in my little red notebook and handed it to the person I was talking to.)

 

 

I was released on Friday, Nov 29 (ANC count 1000+), and am glad to be home. I’ve already resumed treatments; I have only eight radiation sessions to go, and one (or possibly two) chemo sessions. The completion date is still around December 11.

 

 

Good news: everyone agrees that the tumor and the accompanying lymph nodes are shrinking very rapidly. My neck is reddish and looks sunburnt, but everyone thinks the area looks very good. My throat’s painful, of course, and I generate mucus like an opened fire hydrant, but things could be worse. (The header picture was taken this morning a little after 3am. Notice that I have ditched the hospital pajamas. I think I look like Gale Gordon as Mister Mooney, getting ready to reprimand Mrs. Carmichael for something.)

 

 

Thanks to all for your kind thoughts and comments.

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About Loren Williams
Gay, partnered, living in Providence, working at a local university. Loves: books, movies, TV. Comments and recriminations can be sent to futureworld@cox.net.

11 Responses to Update, Dec 1 2013

  1. Jennifer says:

    Hello Loren, I have only just discovered your blog and I enjoy it immensely. I’m so glad that the treatment is going well and that things are looking good. I’m looking forward to reading more from you, your opinions on music, movies, etc and especially I look forward to reading that you are feeling and getting better all the time. Best wishes, Jennifer

    • Thanks for your nice note. I still intend to post – just not on the every-single-day timeline. And, believe me, the week I just spent in the hospital gave me a lot of material to write about.

  2. I think you look a bit like a young Samuel Beckett (he should’ve shopped at your optical store). And I think you look like a man who is living through a monumentally difficult ordeal; and doing it with grace and humanity. Thank you for sharing the journey with us. And we will continue to chant and pray. Love to you and Bill!

  3. starproms says:

    So all in all you are doing very well and you still have your quirky sense of humour! Everyone on here is routing for you so keep with it, please. I too am glad you’re sharing the journey.

  4. clare says:

    Love you, Loren. Glad the tumor seems to be shrinking. You’re going through hell at the moment but it sounds like you are coming near the end of the ordeal.

  5. Janet says:

    Hope you are continuing to stay strong, Loren. Thinking of you. Janet

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