Recovery Status

It’s been a while since I posted my current recovery status.

For those of you new to my blog: I am a cancer patient. I’d like to call myself a survivor, but that term will apply to me in a couple of years. Right now, I am still recovering from my first (and hopefully last) round of surgery, chemotherapy, and radiation therapy.

I was diagnosed with squamous cell carcinoma in August 2008. I had radical neck dissection surgery in September 2008 to remove the cancer from my lymph nodes and from my tonsils. Six weeks after surgery, in November 2008, I started chemotherapy and radiation therapy.

Chemo and radiation ended in January 2009 and I have been in recovery ever since. I need to be cancer-free for at least 2 years before I’ll consider really calling myself a survivor. You can read about my entire journey here on my blog; just click on “Cancer” and “Recovery” in the categories on the right. Newest entries are on top – so if you want to read in order, you’ll have to scroll to the last entry and read your way up.

So where am I today?

• I still weigh less than 160lbs. I am trying really hard to keep my weight down. I was over 200lbs and “comfortably plump” before I started treatment.
• I work out 2-4 times a week. I go to the gym with my lovely fiance, or I’ll paddle board around Lake Fairview with my buddy Jorge, or I’ll go surfing with my brother-in-law, Craig. When I’m truly unlucky I get to do yard work.
• I’ve been back to work since March 2nd. I love my job – they allowed me to slowly get back into the groove of things and are very understanding of my physical limitations (mentioned below).
• I still have no saliva. None. Zero. This has a number of significant impacts on my lifestyle:

I can’t swallow very well. Breads and dry foods are my bane. I have to take small, small bites and use lots of water to get it down. I used to be the first person done at every meal; now I am the last.

I wake up every night 3-4 times to drink water, because my mouth is so dry it’s painful and actually gags me.

I wake up another 2-3 times a night to pee because I drink so much water in the middle of the night. My lovely fiance Carey has finally learned to sleep through my nighttime restlessness, thank goodness.

I have to carry a bottle of water with my everywhere. EVERYWHERE. My mouth is so dry that I need to sip water every 5-10 minutes. Heaven forbid I have a difficult bowel movement – I need to “stop,” go get a drink, come back and “resume” activity.

• My esophageal muscles are still weak from the radiation trauma. Food gets stuck in my throat quite often. It’s a good thing I don’t have a horrible gag reflex (go ahead and make the obligatory joke here, I’ll wait) because I get food stuck every meal and either have to chase it down quickly with water or “hack” and bring it back up to try again. It’s quite a spectacle when I’m out at a restaurant.
• I still have no feeling on the left side of my face where my surgery scar is. It can take a year or longer to come back and, as I have explained before, I’ll never get feeling back in my left earlobe as they were forced to take that nerve when they removed the cancer.
• I ITCH. I think I am having some long-term reaction to chemo. I need to see my doctor about it. I blogged about it already – you can read it HERE.
• Psychologically I’m still dealing with the fact that I have cancer, that I survived the first round of treatments, and that I’m still here to tell the tale. I was telling Carey last week that there is great irony in this if you think about it. Last year I thought I would never die, but I was so unhealthy I couldn’t DO anything with my life. Now, I’m fully aware of my mortality but am in the best shape I have been in in decades- and yet I’m terrified to DO anything. It’s ironic – but I am besting it. I am not letting fear stop me from living – I am active, healthy, planning a wedding, etc. But I am so much more acutely aware of my mortality now.
• I have “chemo brain.” I’ve heard about it from a couple of other cancer patients and it fits what is going on with me perfectly. After treatments, I am not as quick-witted as I once once. I feel “slower” mentally – not less intelligent, just slower. I used to be the quip guy – I could come up with a pithy response to anything. I could engage in active and fierce debate at the drop of a hat. Now, it’s much harder – I need a few extra seconds to collect my thoughts and I feel a step behind when in a room full of people I used to think I was a step ahead of. I hear that this goes away eventually – I hope so. I miss being able to aggressively insert myself into conversations and debates.
• The hearing in my left ear is SHOT to hell. This is a direct result of chemotherapy. I have a doctor’s appointment soon to get my hearing tested, but I know I have less than 50% function in my left ear. It rings constantly and I honestly can’t hear from it most of the time.

All in all I have very mild side effects. I survived – I am here to tell the tale. I am at a healthy weight – I have a new lease on life. I see things a LOT differently now than I used to – I don’t take the people in my life for granted any more. I have made a huge effort to be a better friend, father, son, brother, lover – you never know when your last breath is going to come, so live and embrace your life.

I was reading on FaceBook about a high-school classmate of mine who died from breast cancer last week. She was 38-years-old. I don’t remember this woman from school – but learning of her death seriously depressed me. She had a husband of 17 years and twin babies. Babies that will never know their mommy because of this vile disease. I immediately felt sympathy for her family, fear and anxiety for myself, and guilt.

Yes – guilt – I felt some measure of guilt that I have survived my cancer. I wasn’t expecting that emotion – I guess I bottled it up before now. I have some kind of survivor’s guilt. I feel like my battle so far wasn’t tough enough.

And that’s silly, I know. I lost 50 lbs, was on disability for 4 months, had a feeding tube in my belly for months, was unable to talk for weeks, unable to lay flat, was hospitalized twice, couldn’t eat, drink, or keep food down, had surgery that forever altered my appearance above the neck, lost my hair. I had a tough battle – as tough as any I think. And yet I felt guilty when I read about this classmate who I couldn’t remember dying from cancer.

It’s become abundantly clear to me over the past couple of weeks that the emotional and psychological trauma of what I went through will be years in the curing. I am a strong man – I learned that through my treatments. I can handle a lot and keep smiling – but all the while there was a continual and incessant chipping away of my strength, my self-consciousness, my view of myself, my self-esteem, my pride in myself.

One thing’s for sure – I am a much humbler man than I was a year ago. I have a lot of recovery to go – a lot of it physical and a lot of it mental. I am so, so thankful for my wonderful family.

Carey continues to be my angel and my very best friend. She loves me and understands all the emotional baggage I still carry – she never shies away and always just . . . loves me.

My children are amazing sources of joy for me. They are strong, happy, and well-adjusted. They love me and still see me as a super-dad, even if I sometimes don’t feel like one.

As you can see from this post – I am doing very well, but I wouldn’t say my recovery is behind me yet. Now that the physical symptoms are finally getting manageable I am able to focus on the mental ones. I hadn’t even realized I had them until recently – but I am strong and I am sure that with the love of my family I will get through them just like I have everything else.