Seeking a New Normal

It has been 11 days since my last post. Apologies for the long break. I’m hanging in there. High-level metrics:

  • 12 radiation sessions completed (out of 40; 30% complete)
  • 2 chemo sessions completed (out of 6; 33% complete)

As you will recall, I felt good coming out of the first chemo treatment on Feb. 18, and I continued to feel pretty good for the rest of the work week. The anti-nausea drugs worked well for nausea, but between those drugs, the chemo, an unneeded sinus cold, and the cumulative effects of the radiation treatments, I was unable to sleep much for 2-3 nights after the chemo, and then I hit a big fatigue wall last weekend. I rested a lot, and felt better by Monday, when radiation started up again.

I was feeling pretty good going into my second chemo treatment this past Wednesday, Feb 25. My cold symptoms had subsided a bit, and I had gotten some decent sleep for a couple nights in a row. The second chemo session was essentially the same as the first: saline drip IV reinforced with potassium and magnesium, then anti-nausea drugs, then Cisplatin (the chemo), then more saline hydration. Once again, the direct side effects from the chemo were minimal. I had no nausea and was able to function normally for the rest of the week. The kids and I went to dinner at neighbors on Thursday evening, and I went out to see a band on Friday evening with friends.

My care team had told me it would take a couple of weeks for side effects to kick in. Well, they have. Here’s a sampling, so far:

  • Fatigue
  • No appetite
  • No sense of taste
  • Dry mouth
  • Sore throat
  • Painful to swallow

I had been prepared intellectually for all of these side effects, but you can never fully anticipate how they will affect you. I’m struggling the most now with consuming calories. My care team wants me to maintain my weight at 165 lbs, which is what I weighed in at when the radiation treatments first started. Despite making very deliberate efforts to eat high-calorie meals multiple times per day, I’m probably down to 160 lbs now. Hopefully the hospital scale will give me a higher number when I weigh in tomorrow. 160 lbs is fine, and I think 155 lbs would be fine too. The problem is that I’m eating as much as I can, and the weight continues to drop off. I need to consume about 2000 calories per day to stay even, and on days when I swim I probably need 200-300 calories more. I can still consume solid food, but at this point I’m mostly just focused on consuming calorie-dense liquid foods. Here are my “favorites”:

  • Ensure Plus nutrition shake (350 cal. in 8 fl. oz.; 13g protein, 11g fat) – I’ve had two of these today, and will have at least one more
  • Premier Protein shake (160 cal. in 11 fl. oz.; 30g protein, 3g fat) – I had one of these after swimming this morning and will likely have one more today
  • Elevation Burger chocolate malted shake (710 cal.!) – I get these after my radiation treatments during the week. These began as a treat, but are now really just a part of the nutrition regimen

Sadly, real food is wholly unappealing. I can’t smell it, I can’t taste it, and if it has any kind of spiciness or acidity at all, it irritates my throat on the way down. I’m going to attempt one solid meal per day for as long as possible, because I think it’ll help to keep my digestive tract working properly (knock on wood!)

I think I have essentially reached the “new normal” that will persist until several weeks after my radiation treatments end in mid-April. Not to say that I’ve hit a low point yet, but I think the low points to come will be within the same general band of discomfort that I have reached.

I am so fortunate to be making this journey surrounded by friends and family who are showering me with love, prayers, encouragement, and material assistance. I am also fortunate to have found my way to the excellent neck cancer specialty team at Georgetown University Hospital, and to have an employer-provided health plan that is covering all of the costs of my expensive treatment. Despite all of this, I would be nowhere without the beautiful and unconditional support I receive every moment of every day from Marinka Tellier, my life partner. She has been with me whenever possible throughout these first few weeks of my treatment, and has kept my spirits high with her smile, sense of humor, hugs and kisses. Thanks sweatheart!

 

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6 Responses to Seeking a New Normal

  1. khris says:

    This is my first check in since your original post, thanks for the detailed update!

    Great to here that the new normal seemed to be within the tolerable range and that you are eating well (well drinking well!) & that you have sufficient Love to fill in the gaps 🙂

    Keep going, & looking forward to seeing you on the other side of this one.

    Khris

  2. John & Kay says:

    Thanks for bringing us along on this journey with you. We really appreciate talking on the phone and reading this. Marinka is indeed a great blessing in your life and, a bit more indirectly, in ours as well. We have many people at St. Francis Xavier parish and all over Saint Joseph and well beyond holding you and your medical team and your supporting loved ones up in prayer! As of now we hope to celebrate St. Patricks Day with you. It will be the 53rd anniversary of Kay saying “Yes”. We’ll keep you posted on plans. We love you!
    Dad

  3. Lupi says:

    Thank you for your post. I am sending you love and friendship vibes for your prompt recovery. I am so glad that you have so many people who love you and care for you..

  4. John C says:

    Glad that the shakes are supplying calories. I was going to suggest peanut butter but maybe that would be hard with the dry mouth.

    Best wishes,
    John C.

  5. Brenda says:

    Just heard about this Sean and have you on my prayer list! Stay strong and this will be a blip on the radar screen of life.

  6. Shannon & Benjamin says:

    Sean, hang in there. Our thoughts are with you. So glad to hear that you have Marinka.

    Love
    Shannon

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