More of the same

I look in the mirror and I don’t recognize myself anymore. No hair on my head or my face. Deep black pockets around my eyes. Tubes hanging from my arms. Scars on my side. What happened?

It is frightening sometimes. Looking at the rows of pill bottles. Getting myself psyched for my blood thinner shot every day. Even the cheeriness and smiles of the nurses and doctors have a macabre feeling about them. As if there is a big secret that no one is talking about.

And then on other days I rise to the challenge. I stare at myself in the mirror and think I look pretty good. The little pimples don’t bother me (see Pizza Face blog post from a year ago). I see a little glimmer in my eyes somewhere inside the dark holes. The fact that I can even get up and stare myself down gives me a little thrill.

Lately, I haven’t been sleeping well. A lot of insomnia. As if I spend my days distracting myself and at night my mind opens up to all the possibilities. Its not like I lay awake at night thinking dark thoughts…I just think all my thoughts that I put out of my head all day.

This is another reason why it is sometimes difficult for me to write updates. I don’t want to be full of complaining – and trust me, if I listed all of my complaints in every post you would stop reading. But I also can’t pretend that I’m cheery and full of jokes, as I was for a few months last year.

Mostly, it is just taking advantage of the good days and not lingering on the bad ones. And, unfortunately, I don’t usually know which kind of day it is going to be until I’m already in the middle of it. I’ve had to postpone getting together with friends and turn down dinner requests. And even on my good days, I don’t always want to sit over a cup of coffee and ‘catch up’ about my situation. Sometimes I just want to go out and live a little.

It is confusing. I’m trying to keep focused on the big picture, the main mission, rather than dwell on each little difficulty, each shot, each pill. Keeping in mind the ultimate goal is a good way for me to push through the pain, irritation and suckiness of cancer treatment. Chew it up in small bites which will add up over time. And when every meal becomes an endurance test to overcome my sore throat and take in a meal, it does help to take small bites.

I’ve gotten a lot of great pick-me-ups over the past couple of weeks. Thanks for all the cards, gift certificates (which go to excellent use), dinner options, treats, books and music. Everyone is being very kind. I especially appreciate the things which help make both Jen and mine lives a little easier. I say a thank you for each smoothie that someone paid for.

Speaking of giving…Jen is working on an amazing project to get DVD players and movies available for every oncology hospital room at UCLA Santa Monica and Ronald Reagan in Westwood. I’ll let her do the talking…she expresses the loneliness and frustration of being stuck in a hospital room in a more eloquent way than I can put into words. Please, visit her blog and consider making some kind of donation. It will brighten up the lives of a lot of lonely, frustrated and sick people.

Donations through Giftberry here

Instructions on donating directly to hospital and Jen’s blog post here

I’ve also been touched that other cancer patients have written me some comments on how my blog is full of information and they appreciate me sharing my experience. I find my greatest comfort in talking to other patients…I hope some people can find some comfort in my words.

So…yes, last week sucked. My red blood counts are low, so I’m tired. My throat hurts. I’m waiting for my white blood cells count to come up so I can shake some of the pain, swelling and discomfort that I’m feeling. I have a couple weeks of until my next treatment. But I’m anxious about my upcoming PET scan – hopefully, the end of this week. I’m in a holding pattern.

Instead of sitting around watching the clock, I’m trying to take advantage of every good day. See friends. Enjoy fresh air. Walk hand in hand with my beautiful wife.

I’m less than a week out of the hospital and today was a good day. I’m looking forward to more of the same.

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6 responses to “More of the same

  1. Man, keeping you in my prayers for strength and that upcoming scan. Hope you can get out sometime like you said you need (I am assuming you are at least semi-quarantined like previously). Love you guys.

    • JC – I don’t think of it as a semi-quarantine. I just have to make intelligent decisions about the state of my white blood cells, my fatigue and what I can be exposed to. The past couple of days, Jen and I have gone to the mall. But I avoid groups of people. And if anyone coughs, I beeline away. I avoid kids. I watch what I eat. No hugs. I avoid close contact. And then, on top of that, I might be good for a couple of hours but then I get really tired. I got winded walking around Santa Monica today (low red blood cells). And it was good to get home and rest for a bit. I just take it easy and avoid doing anything foolish that might make me sick. And, of course, I’m feeling a lot better this weekend then last weekend. It takes time. – Lots of love back at ya.

  2. Your blog helps all of us, buddy. Thanks for continuing to share.
    * woof *

  3. Hi Steve,
    Been through what you’re going through and come out the other end only partially scathed. You’re very brave blogging your feelings, don’t think I would have been able to open up so much. I kept a diary myself. The aul’ head struggle is tough and when the fog does lift the battle become’s all the easier. I took sleeping pills for the insomnia because on the long and dark nights alone everything takes on a more sinister feeling. They worked for dark nights and brought through to the morning sunshine.

    I am nearly in full remission. My doc doesn’t want to see me till next May which is all good just another what, 9 months to five years since my last transplant. You are receiving the same treatment as I did and I was told by my doctor that she had a high success rate with the transplant treatment, which gave me hope to carry on.

    You will come out the other end cancer free.

    All the best for your challenging journey, you will be in my thoughts and prayers each day.

    Debs

  4. Hey–I just got an email from Jonathan that you had an awesome scan yesterday–HURRAH! I am rejoicing!! This next round of chemo may be it! So glad.

  5. the bad days make the good days seem better. I had a really bad day yesterday, and the next day wasn’t so bad. re: sore mouth.
    do you guys have gelclair in the US? I managed to score some sachets from the hospital on my stay here. i could send you some to try. They tried to withhold it from me because of the cost and they worry about me over using it ..
    If you are interested let me know.

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