Hard to believe, but later this week will be the three-month anniversary since I finished chemoradiation. Unfortunately, it’s also been nearly that long since my last blog post, although I did write a brief article for Cure Magazine published in April 2016 that can be viewed here.

I haven’t been writing much lately because I wanted this blog to be somewhat uplifting and inspirational. Frankly, the past few months have been extremely frustrating and difficult. It occurred to me, however, that sharing the bad along with the good may be equally important to others facing head and neck cancer. So here it goes…

In my last post from March 2016 I noted that my weight declined by 20 pounds since the start of chemoradiation. I’m now down a total of about 30 pounds (which I still think is okay since I was overweight to start). The additional weight loss comes from a combination of taste disturbances, reduced salivary output, and general loss of appetite during the period.

I’m pleased to report that my taste buds are now ~90% back to normal and that “most” foods taste the same as before therapy. Unfortunately, my saliva output is still greatly diminished and eating dry foods, such as bread, is very challenging. I have managed to eat a hamburger by taking off the top bun and eating the rest with a fork and knife along with a fair amount of ketchup. The biggest issue relates to a general lack of interest in eating, which I originally thought was due to the taste disturbances. Most days I have a high protein, nutritional shake for both breakfast and lunch and then a “normal” dinner and dessert. I haven’t been out to a restaurant since the start of therapy, as I am self-conscious about my eating habits.

Fatigue is still an issue, although it has improved over the past month or so. I returned to work full-time around mid-March, which meant getting up early and commuting to New York. Until recently, I would come home and literally pass out on the couch from exhaustion at the end of the day. Now I am able to stay awake through dinner, watch some television, and go to bed at a reasonable hour. I do still sleep on the morning train ride to New York and look forward to the weekends where I normally sleep until noon or later to catchup on rest.

The one major issue I haven’t discussed at length in this blog is the psychological impact of being a cancer survivor – namely depression. Societal expectations have taught men not to display any emotions. We are trained from an early age to be confident, stoic and strong. It is extremely difficult to fulfill this role or expectation as a male cancer survivor. On more than one occasion I have burst into an emotional crying session lasting a good 15-minutes. I’m not talking about the quiet episode of crying with sniffles and a tear or two down the side of your cheek. I mean full-fledged bawling your eyes out accompanied by nasal discharge and the near inability to speak normally – “I…I…I…nuh…na…nah…need…ah…uh…t…t…tis…tissue.”

The first such breakdown occurred around the start of chemoradiation when my wife and oldest daughter first came to my temporary apartment in New York. In retrospect, I had bottled up all of the emotion from first discovering the growth on my neck, to receiving a formal cancer diagnosis, to my first infusion of chemotherapy, etc. and let it all out at once. More recently, however, I broke down after showering the morning of my oldest daughter’s prom. I started to think about how happy I was to get home from New York during therapy to see my youngest daughter for her freshman formal and recalled the photographs from that evening with my neck visibly red from the radiation therapy. Then I started to think – are these going to be the last “big” events I will be around to see for each of my daughters? That spiraled into a series of awful “what if” questions that left me in a giant puddle.

Most of the time I am able to maintain a positive outlook and not let cancer “win” by occupying my every thought (insert ZOLOFT® ad here…). This is made harder by the requirement for periodic tests and imaging studies to determine whether or not the cancer has returned. Aside from those periodic tests, it feels like I am constantly watching over my shoulder for signs or symptoms of cancer’s return.

For example, in early May my wife noticed my voice had changed. At first she dismissed it as that froggy, lower tone you sometimes get first thing in the morning or when you have a head cold. But it didn’t go away and eventually even I noticed it. Subsequently, I found that the neck area under my chin was swollen. My first thought was “#@$&!” – the original cancer had now spread to the vocal cords, larynx (voice box), or other areas of the throat, as these would all be relevant symptoms. I saw my head and neck surgeon last week and he didn’t see anything suspicious upon visual examination. His initial diagnosis was that the voice change and neck swelling were simply the after-effects of radiation therapy, which can manifest even months after treatment. Nonetheless, he wanted to confer with both my medical oncologist and radiation oncologist to determine whether or not an imaging study is warranted. In the meantime, I’m trying to adjust to my new bass-baritone “Barry White” voice…which may or may not return to normal.

So that’s about it…you are now caught up on my life over the past few months. The next major event will be my PET scan on July 19, which will be the first such imaging test following treatment. Still hoping for a positive outcome from that study and will update as appropriate.

 

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Join the conversation! 5 Comments

  1. I agree – sharing the good AND the bad is important for others and cathartic for you. Carly and I ran into Laurie, and she is positive enough for both of you. Stay strong!

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  2. Dear Michael & Lorie,
    I am so happy to read this update.
    Very best wishes for continuing success on this amazing “journey”.
    Much love from Susan

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  3. Michael, I am thankful for your posts as it helps us to know how you and the girls are. But I need to give you just a small lecture…with love. Please allow yourself time to cry, time to wonder time to let us know how you really are. There were plenty of times I would find John in tears (yes he would have killed me for saying anything) but for all the reasons you mentioned. Would he be here for Kates proms, graduations, and the kids weddings and grandchildren. All I could say to him was there are no guarantees I could get hit by a car walking to my classroom from my car. Kate could become a nun..so no worries for the wedding (yea I know definitely not but at that point who knew) I cannot imagine what goes through the minds of those with this diagnosis but what I do know is those of us walking it with you have the same fears, anxieties and emotions. Of course, it is you the patient who lives with the final diagnosis but you have Lori and those wonderful girls who will be behind you all the way. You have family and so many friends who care deeply and want to be there for you. You are a strong person …stood with me throughout Johns time dealing with this freaking disease. You have the background and while at times like this that can be more of a negative use it as a positive helping us to understand what you are going through. It truly can be beneficial for you and others walking this walk. My heart aches for you guys, for I continually question the whys of this and yet there are no answers …just situations each and every day that cause me to pray more deeply for a cure and help for the families. To this day, Michael, I still break down when I think about John…oh sure it’s behind closed doors, so no one knows. It’s at times when I least expect it and most tell me get over it…I now have learned to not get upset when people respond negatively but rather figure it is their blessing to have never walked this road so as they cannot possibly understand how it really goes. My point is,allow yourself to cry to feel sad and pissed, wondering if you will be here for the next important event. But also allow yourself every moment to be in the present and love what you have in life. Your family is amazing…I know …I benefited from all of your support when John and I were at our weakest. Know those of us who care, love your blogs…good or difficult, For it allows us to walk with you and hopefully gain some understanding of what you are going through. Yes I have walked it with John but not a day goes by when I don’t ask myself did I do the right things, say the right things, what was he thinking. Your writing allows us some hope that we have done what we could and are within the norm of thinking and wondering so many things. The Becker family will always be a huge part of our hearts ….we love you guys even though we are far apart. My prayers are every day that you get through this and can one day look at this as a bad nightmare. Johnny marries his love in 6 weeks….John should be here to share in this glorious day. In my heart, he is…my prayers for you that you will see your girls through all the important events of their lives and be the same crazy fun loving family you are. Love to all.

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    • Crying is good for the soul. Don’t let past expectations of men being “stoic” stop you from having that good ole full-fledge, sobbing, flooding cry. I can relate to this when I went through breast cancer myself. I felt I had to hold up and be the strong one for my family. Felt like I had to keep it together so that they wouldn’t fall apart. Needless to say, I did fall apart and many a day had those full-fledge, sobbing cries. It is so wonderful to hear of your progress so far. I have been checking back on your blog almost daily and finally the wait was worth it.

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  4. Your most recent post has been on my mind all week. As you know, I lost my dad to cancer just last month. Unfortunately, throughout his brief battle, my dad kept his hopes and fears largely to himself. I am certain that he did so because he didn’t want to burden his family with additional worry or sadness. He was stoic to the last. The thing is, I wish he had shared because there is something very therapeutic in talking (or crying) and that therapeutic effect extends beyond the patient to the communication partner as well. If you haven’t already done so, I hope you’ll share your emotions in the presence of your daughters and whomever else you feel comfortable opening up to. I continue to send positive energy your way. Looking forward to hearing good news from you in mid July.

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