This week I was able to move out of my temporary apartment in New York and return home to Bucks County, PA. I don’t know whether it was being away from the loud traffic noises or just finally sleeping in my own bed, but the first night home was the best night’s sleep I’ve had in weeks.

As predicted by my physicians and nurses, the weeks following chemoradiation were the most difficult in terms of toxicities due to the delayed effects of therapy. For me, week #8 was the worst and I required additional hydration pretty much every other day during that week. This was due to the fact that my electrolyte levels, in particular magnesium, were low. Fatigue was probably the greatest side effect, but in general I just felt like I had a really bad case of the flu.

By week #9 the physicians indicated that my electrolyte levels had stabilized and/or improved, meaning that I didn’t require as frequent hydration. That gave me the freedom to return home since I didn’t need to be near MSKCC.

My salivary output and taste buds are still off as a lingering effect from the chemoradiation therapy, although I understand they should return over time. This makes it difficult to eat – or at least find food that is appealing. I’ve lost more than 20 pounds since the start of treatment, which doesn’t disappoint me as much as my doctors.

I’m hoping to return to my daily commute to NY for work later this week and get back to a relatively normal life. The radiation burn marks on my neck are nearly gone and you’d hardly know by looking at me that I just went through seven weeks of pure hell.

My post-treatment visit with Dr. Nancy Lee has been scheduled for mid-May 2016 which is when I’ll get my first update on the treatment efficacy. She did order a PET scan on my last day of treatment, which looked encouraging although you cannot draw any definitive conclusions at this early stage. Nonetheless, there was decreased fluorodeoxyglucose (FDG) uptake in the right tonsil and in the rim corresponding with the neck nodal mass. Interestingly, the neck nodal mass also originally measured 4.0 x 2.6 centimeters and now measures 2.3 x 1.6 centimeters, which is a dramatic decrease in size.

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Join the conversation! 10 Comments

  1. Welcome home, Michael! And congratulations on making it through the treatments. Our thoughts and prayers will continue to be with you every single day. If you need anything, please let us know.

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  2. Sounds like things are going great for you. So now that you are back in our home town, let’s schedule a lunch together. I know that food does not taste great as yet, but we can find something at Charcoal that may appeal to you. I promise you that taste does return. Mine did, I just takes time. Send me some times that work for you. jwarshafsky@ashtontweed.com.

    Regards,

    Jordan

    Reply
  3. Glad you made it through! It was tough to watch as an outsider, but definitely appreciate your blogging and sharing. My very best wishes to you and your family! Chris

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  4. I just read this post tonight. Sorry – I have been trying to keep up to date😔 Anyway, it sounds like the worst is over, and the PET scan done already is hopefully a precursor to an even more promising one in May. Your comment about your weight loss made me laugh. That’s one heck of a weight loss program you joined! Welcome home, and I wish you normalcy ASAP!!!

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  5. Glad to hear that you are finally finished with with treatment….Welcome home! Have to agree with Jeanette about weight loss….hard way to lose, but a good thing. I’m sure as time goes on, you will begin to “eat dessert first” more and look at your life decisions differently. I so very happy to hear that things are looking up, and welcome home…or at this point you might be returning to work again soon.
    Shelley

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  6. Michael,
    Hi!

    You are a new follow of mine on Twitter.

    I read your entire blog – backwards, haha (normal for me; girl-nerd) and found it so moving, and mostly educational.

    I’ll have to say that much of it brought back memories that I had visceral reactions to. Sometimes I felt my stomach get tight, sometimes I couldn’t breathe. But mostly I’m glad you had your family with you for support. You are a very blessed man indeed.

    I have written about cancer, in general, at BellaOnline.com (cancer site), but have not blogged about my experiences thus far. Writing for three years (plus research, book reviews, etc.) took a lot of mental energy, so I resigned at the start of 2014. No one has taken over the site, so my articles are still up. (link is below)

    I met my oncologist the day I turned 26. He asked me how old I was and I couldn’t remember (and I’m a twin). I suppose that’s the first sign of PTSD after diagnosis. Mine was female stage 2b uterine from a birth defect. I signed up for a scientific study (they did a lot of exploratory surgery). They removed 50 lymph nodes from my groun to my breast. Not even one was positive. But, they were gone, so I quickly developed lymphedema in my groun and right leg.. It became painfully chronic within three years. I worked at a law firm and sat all day at a computer, which only aggravated the condition. My uncle (not the doctors) introduced me to compression garments (he was a salesman at a local durable medical company) and I’ve worn them ever since. They do help. It’s a love/hate relationship I have with them. Three years ago I slacked off wearing them. After 30 years, I was just tired. Last year, I was hospitalized for chronic peritonitis and they found ‘fluid’ behind my pelvis. So, since January I’ve been sleeping in them (which I had never done before). They have helped decongest the fluid. Now, I’m afraid to go without them. I just turned 59 in March. At diagnosis, like you, as young as I was, I was so “on it” about trying to do everything right. I also had a great doctor. Even so, sometimes days can be bummers. But, I’m still here and so grateful.

    My parents were there for me at hospital, but they were emotionally removed from me most of my life. You are so fortunate to have family and friends beside you. They will be your greatest relief, I promise (besides God himself).

    I could relate to so much of your emotions and thoughts. I thought it was so funny the remark you made about brains light up in scans when people are brilliant – too funny.

    Sorry this was so long, but I felt you would appreciate hearing about my experience. I’ve been working on my memoir, but got side-tracked when I started as cancer site editor in 2011.
    Here’s the link to top ten: cancer.bellaonline.com/top-ten
    I think that’s right-

    I so enjoyed your journal and family pictures. It’s hard for me to look at body parts! I think patients and doctors alike would like your journal. It’s got everything– and so well written.
    You should turn it into an eBook! Seriously.

    Nice to meet you, and you’re in my prayers for full recovery and low-low side effects!

    P.s. My uncle survived stage IV same as you 2007. He was at UAB Birmingham where I was. It’s a great hospital. He was late 50s and his mask was traumatic as well. He has to use mouth and throat hydration too, but I’ll have to say, he looks pretty darn good to me last time I saw him.

    Ok, I’m done!
    Cheers and God bless,
    Rann
    @RannPatterson
    rannpatterson@live.com

    Reply

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